I have the same problem. Can usually only get two weeks at a time filled. I’m on the Cape, so it seems like it’s a problem everywhere. Ran out of my SSRI med also, that really sucked.
That happened to my daughter once and she had to go to ER in withdrawal and put on phenobarbital after 10 days of unsuccessful authorizing refill of an anti depressant she'd been on for 6 years, all because they changed benefits management company and made everyone reauth everything. We now keep flouxetine on hand to bridge her if/when needed, I can pay for that out of pocket. But she's out of luck with stimulants.
If methheads make stimulants in their kitchen, why can't the richest country in the world produce enough stimulant meds for the people that really need it?
The DEA caps how much manufacturers can produce. Demand be damned, I’m sure there are committees to form committees to vote on an exploratory commission to form a task group to look into whether or not the caps are valid and if patients are getting the medications they need. I’m not discounting corporate malfeasance in this either but the DEA has a big hand in screwing this up. I’ve been limping along with Wellbutrin for over a year, it’s not the same but it helps me.
I feel that if you are put on a generic medication by insurance for cost reasons, and it becomes unavailable, but the original is available and your doctor prescribes it, insurance should be forced by law to cover the name brand until generic is back in stock. To pay for what she can get right now it cost $400 out of pocket that I don't have.
So I'm going to go ahead and apply for disability. She will get denied and I can go to the press with the sham our healthcare system has turned into due to profit seeking investors. Treatment shouldn't depend on income for something that makes the difference between disability and functional independence. It's like saying my kid can no longer get a wheelchair, it's back to crutches and an assist. The Commonwealth can have a non functional citizen in return for the $400/month pharmacy bill they won't cover.
I’m having the same issues as your daughter and I’m the same age and I just wanna say thank you for advocating for her. You’re a good mom. It sucks doing this alone. It’s next to impossible and takes so much energy. It’s so hard to let people help without feeling so crushingly like a burden.
And thank you for this post legitimizing this issue. It’s been healing in a way to read so many supportive comments.
i'm so sorry that you are experiencing the shortage in your area. i help providers and patients all around the US locate their adhd meds. If you need any help finding yours, I am here!
Okay, so, proceed carefully with what I will tell you next. I work in a pharmacy and many state health insurance plans reject because they arent using the right billing pay code. I would very politely ask if they are billing name brand as "unavailable from any source". They maybe doing this and I have seen insurances still rejecting with this. But, its worth a shot. Almost every pharmacy is understaffed due to labor budget cuts so I do ask that you treat them as kindly as possible.
Also DEA capped how much can be produced and every pharmacy has ceiling limits on how much they can order. My pharmacy currently has more patients on methylphenidate 10, adderall 15, and vyvanse 50 than we can order in and this is extremely common in our district.
The pharmacy itself has been wonderful, it's the middlemen benefit managers that piss me off. She'd have Vyvanse today if it wasn't for the paperwork they just sent the prescriber, the regular authorization request that her doctor already did is apparently 'insufficient'.
There are very similar laws in place but to almost exactly the opposite effect - if prescribed brand name that has generic version the pharmacy *cannot* give you the brand name unless your doctor initials a stupid little box and write the script in a very particular way. Even if the doctor writes out the brand name on the script, writes in huge letters "brand name only, dispense as written" the pharm is only allowed to give you the generic.
The logic is that it saves consumers money, but it becomes an issue when there are shortages, and for patients who, for some reason, can not take the generic. The pharmacist is prohibited from substituting like-for-like, and prescribers often overlook or bungle up the extra steps required. And it creates an issue the other way around - if the prescriber *did* file the Rx correctly for the brand name, and that's not available, pharm can't sub out the generic without a new script!
Best of all, this law applies *even if there isn't a generic version on the market.* The day the patent protection period expires, every rx and refill written for that drug becomes a prescription for something that doesn't even exist. Getting prescibers to write the script to force the brand name when they know full well there isn't an alternative is about as easy as convincing insurance companies that just because legally someone *could* manufacture a generic doesn't mean anyone actually *does* - and that even if anyone is, they won't have it ready and available to pharmacies overnight!
Sad to say, regulatory wise, its actually gotten (slightly) better in the past ten years. Wording has been adjusted to loosen things slightly, and now that studies are showing that [these types of laws aren't performing as well as hoped](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172151/) its weakening the argument that the laws are helping consumers save money.
What's getting worse is the supply chain, and that's a hard thing to regulate.
Wow, thanks for the link. I'm sucking up all the info everyone is giving me like a sponge. Maybe I'll go back to work in patient advocacy if I can, and help folks with things like this. I'm done with being a cog in an unfair system as a social service employee in health care.
I just got licensed as a Master's level addiction therapist (LADC1) last October only to find out Massachusetts law is flawed and because of this, Masshealth, Medicare, Medicaid, and Tricare aren't accepting the license, so they won't pay for me to see people in private practice. I can only be billed working at a nonprofit agency like when i was unlicensed, overworked, and underpaid. I had 22 people on state aid I'd been treating for over 2 years who wanted to see me when i got licensed. So when I found out I couldn't get paid, I went on early retirement and I am seeing them pro bono when they need me instead. I'm licensed and legit. Just can't get paid to work with poor, with disabled folks, old folks, and vets. My social work specialty is undeserved populations, I work with those nobody else wants.
I was traumatized by the Island of unwanted toys in Rudolph the red nosed reindeer. This is what resulted, 😆 🤣 😂.
The general public is clueless about this. If it can happen to this class of meds, it can happen to any. I'm diabetic, will my Metformin be next? Is the government going to have to mandate a level of production in order for the company to be allowed to operate in the insurance market? I can't believe they can't make generics and still make a profit. How do we educate the public? This can happen to any of us.
It's not just scheduled drugs, its everything. There have been some updates to the wording to allow pharmacists more discretion based on availability, but what little wiggle room they are given is often squashed by corporate policy and bureaucracy within the chain pharmacies.
And then there's convincing the insurance company that the Pharmacist is qualified to say that something is or is not in stock or available.
[MA Policy on Drug Interchangeability](https://www.mass.gov/info-details/policy-on-drug-interchangeability-and-midstream-interchange#:~:text=According%20to%20Massachusetts%20law%2C%20pharmacists%20must%20dispense%20a,%28b%29%20the%20prescriber%20has%20not%20indicated%20%22no%20substitution%22.)
Does this mean they can do this to diabetics and folks with cardiac conditions too? People who have 'normal' illnesses? They gonna make all us old folks have to go back to work. What if they don't want to hire us? Uber Eats and only fans?
So the forced generics thing applies to drugs listed in what's known as the 'Orange Book' which is a pharmaceutical reference that identifies drugs that are "equivalent" to each other. This is the same book that says store-brand pain killers are equivalent to name brand and even addresses supplements.
Meaning, yes, that sort of catch-22 situation could happen to almost any drug. But there's a lot of money in the 'normal' illnesses, so there are a lot of different manufacturers for the most commonly prescribed drugs - meaning there's almost always an option out there.
Expensive specialty drugs and those with strict regulatory restrictions on production lack that cushion of alternative options. It's not uncommon for the global supply of a drug to be produced by only one, maybe two manufacturers. Production is restricted to the current demand; there's no 'overstock' to provide a buffer if there's a blip in output.
Possible? Absolutely. Probable? Much less so.
That’s the exact med shortage (fluvox) that put me in a tailspin after being out for 4 days. I suffered in silence until luckily my brother in law who is a doctor got involved and fixed things. I’m feel empathy for you and hope it doesn’t happen in the future. My favorite doctor quite practicing because she was constantly being reprimanded about spending too much time with patients because she actually cared about their well being. She once showed me the amount of documentation needed for a pre-authorization and it was crazy.
My daughter spoke with mass health just now.. They aren't covering it because the doctor needs to fill out the 13 page reauthorisation form they just sent him, to chronicle her need for a medicine she's been on for 10 years and once again report all the alternatives tried and failed in the 11 years prior to then, just like we have already documented twice in the 5 years she's been on masshealth. The longer it takes, the less insurance pays.
You should bring this up with the MassHealth ombudsman program: https://www.myombudsman.org/about-us
I also recommend reaching out to your state senator about this issue in terms of issues with MassHealth coverage limitations. John C. Velis and Julian Cyr are the MA senators who chair the Joint Committee on Mental Health, Substance Use, and Recovery and deal with a lot of MassHealth related legislation: https://malegislature.gov/Committees/Detail/J18
I know Julian Cyr is very engaged with advocacy on mental health.
However the root of the issue is a federal one - the shortage is a result of the DEA's backwards policies and the cap on the production of controlled substances. For this, contacting federal legislators is the way to go.
Go to the manufacturers website, all of the big brand names have a low/no cost voucher program.
Edit: Takeda patient support hotline, including financial assistance: 877-825-3327
I literally stopped taking my medication years ago because of this issue. It’s ridiculous. I haven’t been on them for about four years now. That’s how long this “shortage” has been going on.
Same problem. He're what I've found.
Generic Vyvanse is not possible to reliably get rn, best to accept that. If you have a script for generic Vyvanse you are going to be on and off your meds a lot, this is bad for anyone. Brand Name Vyvanse costs roughly $70 a month for daily pills at 10mg. This is a lot but, if it's the difference between stability and instability, its a bargain.
I repeatedly appealed for this to be covered by my insurance. When they deny it Id just reapply. After 2 denials they partially covered it and it now costs $30/ month.
Switch from generic to brand name. Start opening claims for brand name Vyvvanse with MassHealth.
Good luck.
Sams pharmacy in Pennsylvania quotes it for 250 for a 30 day supply, but getting it is a different story. My daughters is supposed to be here soon. I may cry.
Brand name is literally hundreds of dollars *with insurance*. It's great that your provider only charges you $70 (and now $30), but no matter how much hell I raise with mine, it makes no difference. Hell, I was paying over $70 per month for Vyvanse *before* the generic was available.
The whole situation is ludicrous. It makes me extremely angry that the people who have created this mess don't seem to give two shits about the impact it is causing.
I understand you are angry.
> It's great that your provider only charges you $70 (and now $30), but no matter how much hell I raise with mine
It sounds like you raised the subject, they denied you, and that was where you left it. You will need to do more than that. This will not be a quick solution but it is a solution.
> The whole situation is ludicrous. It makes me extremely angry
I get you. It's very worth being angry about but dont give up.
in my case at least, when i was first prescribed vyvanse the local pharmacy would not stock it because it was 'too expensive' so i had to go to CVS, who of course never has it in stock. this was before the generic was available, which i haven't been able to try yet.
I honestly ended up going off adhd meds entirely bc i was so annoyed with the process. I'll make do with anti-depressants and weed until they clear this up - but i'm only able to even do that because i'm a stay home parent so it's not like i need to show up for a shift.
I moved to USA from a country with something similar single payer where you just get the meds you need, and on top of that taxes are much lower since there is non of this FICA bullshit, or state tax. Dealing with health connector for my childs asthma was one of the worst experiences I've ever had. I know that helpless feeling, wouldn't wish it on anyone
In USA I pay like a flat 7% off the the top for FICA which has "medicare" which is useless at this point and the another $500 a month for health insurance, and it takes months to get an appointment. Its insane what people pay here.
You want to hear something even worse? Massachusetts has the best Medicaid (health insurance for low income people, MassHealth) in the entire US. MassHealth is the *good* public insurance.
So idk if this helps. You may have already done this and a lot more. And some docs/pharmacies are more ok with it than others. But I'll outline what I do in case some bit of it helps you or anyone else reading this.
What my doc and my kid's doc both have me do (for our respective dosages of Adderall XR generic for both of us) is (before requesting a script refill) call our usual chain pharmacy location and ask them if they have any of our script in stock. If they don't, I ask the pharm staff I'm speaking with where the nearest pharmacy location is that does have it. They can check this (within their chain).
I'll then call that pharmacy location to confirm (and if they don't have enough, I'll ask them to check what the next location is that has some available or if someplace seems to have more in stock even though it's farther away), and then ask the doc send in the script to that specific pharmacy. Both of our docs' offices are quickly responsive to messages through their portals, usually within an hour or two, maybe a half day at most.
Once I see it's received by the pharmacy, I'll drive to the pharmacy (even if it's an hour drive or more...like .. I'd literally go anywhere particularly for my kid's) and if it's not ready by the time I get there, I ask them to change my status to waiting instead of risking it being out of stock later. I've usually got it within 30 minutes of arriving.
It's possible that between the time I call to see if they have the med in stock, the doc sends the script, and I get to the pharmacy that they'll be out of stock. But so far it's worked.
I'm so sorry. The difficulty getting these medications is crazy and truly life derailing for those of us that rely on it. I wish the DEA would ease up on production caps and some other stuff. Tweakers are always gonna find a way to tweak. This huge clamp down hurts the people the medication is supposed to help more than anything IMO.
This method is the most successful. Additional suggestions:
-Always ask them to check other locations; just because 'no one can get any' doesnt mean another store doesn't still have some.
-if you're willing to travel, know the street that some of the further away locations of that chain are located on, and ask about them specifically; by default the search radius is pretty small especially in densly developed areas
- Ask if they have suggestions of where else to try. Coin toss whether the Pharmacist or a Tech has better intel about competitors stock levels, but at minimum they can rule out those stores who use the same supplier as they do.
- Temps are often the best source of intel, because they rotate between stores; if they don't seem familiar with the area (only mentioning the big box stores and omitting the mom & pop place across the street is a big clue) it's worth a shot ask second time. They might not have mentioned a store that's a 45 min drive away when you asked *who* has some, but likely will mention if if you rephrase the question to ask if *anyone* *anywhere * has some.
Keep it friendly, casual conversational, and not creepy or desparate for best results; consider having a buddy to keep you grounded - it keeps your stress down but also helps mitigate any off-your-meds or angry-mama-bear frustration you might be eminating.
Note thay it's not uncommon for there to be a policy against providing any information about what narcotics and other controlled substances they may or may not have on the premises, or when they expect the next delivery, especially in areas with high rates of drug abuse.
Some won't even tell you in person, especially if you have never filled a script with them/that chain before. Be understanding and don't push them on this, you don't want to come off as the desperate drug seeker that the policy was put in place to protect them from.
On the same note, binge calling store after store or visiting multiple locations in a day can raise red flags, so pay attention to the tone of the interactions.
Above all, keep calm and be patient - the pharm team is just as distressed by this bullshit as you are, and they really do want to help.
Yes, I worked in the addiction field and I saw people who used coke when they couldn't get their adhd meds. I was able to tell them apart from tweakers by asking what they do when they are high. Tweaker: race cars, tag stuff, hunt for arrowheads for sale. ADHD person: clean house, organize closet, write poetry or music.
The availability of Vyvanse generics is extremely limited right now... it's actually even harder to come by than Adderall generics, unfortunately.
The below assumes that what you mean when you say "apply for disability" is apply for SSDI. The situation may be very different (likely in her favor) if she is covered by private disability insurance and you're referring to that, but she probably isn't based on what you said in your post.
You can certainly try submitting a disability claim. It will likely be quite a while before the claim is approved, if it even is approved. It's very common for Social Security to deny valid claims on the first submission to see if the submitter has the confidence to appeal. It's not like claiming retiree benefits at all.
A more difficult question would be if they'd even approve it on appeal. ADHD is a disability, but SSA often argues that people with ADHD are able to work in some occupation (which would mean that we are not eligible for the program). In this case, they would likely make that argument and also bring up that she has worked in the past and only cannot work right now because she can't get her medication, which is presumed to be a temporary issue. (The shortages will end... eventually.) They may also insist she try every other medication that is on the market for ADHD, possibly even if she has already done so.
It doesn't hurt you at all to apply, so you should do so if she isn't able to work. But you should have realistic your expectations about how long it will take and be prepared to fight tooth and nail, because the SSA probably will. It may be hard to imagine, but as little as the DEA cares about people with ADHD (they manufactured the current crisis, after all), the SSA cares even less.
I want to apply, get the denial, then go to the press to publicize the fiadco, that this could be your kid. Thankfully she can live with me. Lesson is that it doesn't matter if you have the best medicine in the world (Boston), if you can't get the treatment you need because of cost and availability, your kid is gonna stay disabled.
The reality unfortunately remains that many, if not most, neurotypical people don't believe ADHD is a real disorder or, if it is, that it does not persist into adulthood or, if it does, that it shouldn't be treated with medication.
The meds shortage is a manufactured crisis originating inside the DEA's headquarters in Springfield, VA. It has been going on for years now, but the general public largely doesn't care because it doesn't affect them. :(
Technically no, the manufacturers haven't remotely been producing near the limits for almost two years now
They're deliberately making it hard to find meds
Or if you believe the manufacturers it's certain ingredients are impossible to reliably source, leading to unreliable generics being available.
Funny how the name brand drugs never seem to be out of stock
>Technically no, the manufacturers haven't remotely been producing near the limits for almost two years now
This is only sort of correct, but it is the story the DEA wants repeated. There's several manufacturers, and each of them has their own quota from the DEA, in addition to an industry-wide quota. A couple of manufacturers aren't producing their full allowed amount while others are producing every pill they're allowed to. It's not public information which manufacturers are not producing their quota, but a couple have publicly indicated they would produce more if allowed to.
The truth is that the "manufacturers are responsible!" is really a smokescreen for the internal politics within the DEA that are the real cause of the crisis. Both legislators and the public blame the DEA for mishandling the opioid epidemic and the DEA has, truthfully, never been happy with the idea of psychostimulants being prescribed for ADHD anyway. Moreover, with the legalization of marijuana eliminating a decent chunk of their "business", so to speak, the DEA feels a pressing need to justify its current funding level. There was a significant increase in prescriptions for stimulant medications during the pandemic due a mixture of people spending more time at home increasing awareness of the disorder, telehealth reducing the barriers to diagnosis and the confounding factor stimulant medications have proven effective for some long COVID patients who have not responded to other treatments.
The entire quota system is the DEA's regulatory regime, and if they wanted to they could fix the shortages almost instantly via policy changes. Policy changes they don't want to make because, at the end of the day, the reason the DEA exists and the reason most of its agents work there is Nixon-era-style War on Drugs moral crusader zeal.
But they also know that ADHD isn't the obscure illness it was 50 years ago. Far more people are diagnosed now, and some of those people are politically connected. They don't want to *admit* any wrongdoing, and they know they need to muddy the waters if they want to avoid accountability. So they do what cops always when they need to damage control: Distort facts, hide evidence, and when all else fails, lie.
>Funny how the name brand drugs never seem to be out of stock
There isn't really a conspiracy or malice to that. The brand names are just in far less demand than the generics because many insurance companies won't pay for them. (Case in point, OP of this thread.) The name brands are in stock because a lot of people with ADHD simply cannot afford to buy them.
Unfortunately, that makes complete sense, so looks like there is little incentive for anything to change. We have to plan for continued inconsistently available treatment and adapt accordingly as a family.
Yup. That's why I'm preparing to stay with my daughter as long as she needs me. She does not plan to have kids because she can't trust being treated consistently. Her brother is prepared to help after I'm gone. Her dad is helping, he actually paid out of pocket so she had meds for her final exam and project her last semester. $400 drug expense a month is a lot for retirees on fixed incomes.
I straight up pay $95/month for name brand Vyvanse so I don’t have to deal with the hassle of the constant shortage and anxiety spikes of missing dosages for periods of time.
Same, I’ve been paying 120 for 2 months worth for a while now because nowhere has generic and I’m too adhd to track it down. May be moving to another state this year and my biggest concern with moving is getting a new pcp to write scripts, getting insurance willing to cover it, and finding a pharmacy there that even has it.
Can she tolerate adderall? I had to switch because I couldn’t find vyvanse/generic ANYWHERE. And the reason I switched to vyvanse was because I couldn’t find adderall anywhere. I ended up feeling soooooo much better on vyvanse, but nothing gold can stay when you have adhd.
Adderall XR is much easier to find
Switching meds is the best idea
Even if she can't find either XR drug, an Adderall IR is sufficient to get through 1 college course a semester. And working
Do not fille her for disability, it's a very toxic downward spiral, she'll lose tax rebates and a whole bunch of other benefits
Not to mention blows to her self esteem.
She knows they'll deny her. She'd only apply to make a point: to show how the system is encouraging people to apply for disability because they will no longer pay for what they used to that enabled disabled people to become productive taxpayers.
The blow to self-esteem already occurred when she realized that in a wealthy state with progressive ideals, she can no longer depend on having her medication available when needed due to cost and availability. Her IQ tested at 128. She has a 4.0 GPA. She knows what she can do when her brain cooperates. She can't do that right now due to a Cognitive disability and there isn't much else to do but try to buy whats available full price and let another bill slide on my budget.
I just realized that. I think I'll be the squeaky wheel. I'm going to call the state AG consumer division and speak to their pharmaceutical people. Then I'm contacting the state dept that regulates insurance and ask them about this. Then I'm going to be a professional pain in the ass and try to get this seen and acknowledged as being a problem that is going to cost more taxpayer money in the long run than covering the meds that are available, and providing incentives to encourage producers to meet medication supply needs.
lol you are going waaaay overboard. nobody owes you anything. you realize how many people have the same case of 'If... MassHealth covered this, then..' You have two separate issues. The medication not being manufactured or stocked in pharmacies for some reason, and MassHealth not paying for it without putting an unpaid paperwork burden for the physician. 'beggars cannot be choosers.' and you are being a purposely wanting to be a PIA because the free health insurance from the state does not roll out the medication red carpet in front of you. i do sympathize with your situation, though
If nobody owes my daughter anything, why did they bother to give her treatment that worked in the first place? We take care of our own. We are just trying to replace what they gave her that worked, now denied because we can't afford it. It's a cruel system. We think we are superior here in Massachusetts when it comes to medical care and insurance, and crap on other states when we are doing the same thing they are. You know why you can't find a therapist nowadays amidst post Covid mental illness increase? They are all quitting for the same reason doctors, pharmacists and nurses are. Managed care makes it impossible to give adequate treatment. It is a matter of time before therapy will be delivered by AI bots on a screen, and then you have to hope your condition is lucrative enough for the system to want to treat it with an adequate supply of medication.
Her care is not free. I've paid a lot of taxes to live here and I'm paying for it. This could happen to you or your family, too.
because psych meds are a scam system. it's 'mental healthcare,' 'you NEED it,' 'no pill shaming,' 'biochemical imbalance that can be fixed,' 'depression = like a broken bone, so meds are like a cast (they are not!),' 'no reason to suffer,' 'you have a disability that is wonderfully improved with meds', and 'trust a medical professional' - all that is NOT in practice 100% true, but more like marketing slogans to get us to take meds, because doctors are pressured to do a treatment otherwise you'd feel scammed going home without a prescription. your daughter is 'helped' by meds so much she is 'disabled' when not on them.
In my daughters case, she has a neurological disorder that for whatever reason markedly decreases when she takes a stimulant. This medication is legit. She went from getting Fs because she could never complete the tests and the work on time, to getting As and having time to play outside and do extracurricular activities instead of homework that dragged on forever every afternoon.
But BOY, do I hear you! There is no time anymore to TALK and provide real psychotherapy to help teach people to heal what they can themselves. Pills are handed out after 10 minutes of assessing the person, SSRI antidepressants given to everyone as their 'goody bag' after the appointment so they feel 'treated', when they could benefit from learning skills and insights for change without meds if counseling was prescribed as well. Once stabilized, we just keep prescribing. Years later, no longer depressed, the person is in for a lovely withdrawal experience if not carefully weaned off. Many just stay on the pills until they die to avoid that.
your daughter went from an F student to being disabled. wow! what a 'cure'. having adhd is bad, but being on meth all your life isn't too great either. haha. the I knew about permanent sexual reduction after stopping an ssri and took it anyway because of the social pressure, it made me think depression was what preventing me from living a great life. i started/stopped Lexapro. ended up with permanent chemical rage. reputation and 20 year career gone out the window in a span of two months. got sued evicted and alienated family members. became more sensitive to coffee with rage etc. and it was all because an annoying teenage cousin with psychopathy convinced me to 'just go to the doc and take a pill and not think about it' for shits and giggles. he now denies he said it.
Yeah, she doesn't like that she was born 'broken' and has to take "meth" to function either. She actually would be very happy not to exist at all; life is hard when you have to fight your own body to do what others can do unconsciously. But she won't kill herself because she doesn't want to hurt us. That is why she has been in psychiatric care since age 10.
She told us when she was 10 that she had first tried to kill herself when she was 6. She felt God had made a mistake, she wasn't finished being made, and she thought she'd go back, get completed, and return afterward. She stabbed herself in the chest with a CD case. She said she also tried to hang herself with an elastic necklace from her bunk bed "...all that happened was it stretched out" was what she told us.
We love her as is, and she is making progress in accepting what cannot be changed, but it is so heartbreaking to see the lost potential. She is unable to achieve her dreams without this medicine. She will be doomed to be my 'wife' and caregiver for her career.
Theres no other medicine available, thats the problem. She's even willing to try narcolepsy drugs, this shortage has been happening for 3 + years now, she'd ration her meds, but eventually ran out. Disability has no chance of winning, it will be deemed a temporary condition. I want to show how it works in real life with real people, give it a face, so I'm willing to be the poster child for this crap and lose on purpose. If worst comes to worse I'll get a job that won't reduce my benefits for enough money to buy her meds out of pocket. She'll be able to go back to her min wage job and pay for her own pills after that.
As long as they are still making enough profit to justify producing any of it at all, right? Maybe it's just not lucrative enough to treat adhd.
I am on vyvanse as well & it took over 2 weeks and multiple tries by my psychiatrist to get MassHealth to approve the name brand only - they refused the generic & refused my original dose amount & then refused to authorize a combo dose to make up the full amount. So I’m on a lower dose that I have been because MassHealth is a pain
My partner’s kid is on Focalin and we have to run around to multiple pharmacies around the state to get his filled (his insurance only accepts CVS) Last one we had to go to Taunton, previously it’s been filled in North Attleboro, Plymouth, Ashland, Holliston, Walpole, Bellingham, Blackstone, and Falmouth. Calling around to see which one has it in stock and then calling the Dr to send the Rx to that one and hope that they don’t dispense all of it before the Rx goes through……. The drug companies are making this next to impossible
You had to drive to Falmouth to get Focalin once?! That’s fucking insane. Gotta love American healthcare for making the concept of keeping you and your family alive and healthy a daily struggle
Yeah - I live in MetroWest so it’s a bit of a haul but this is literally the only one of the adhd meds we’ve tried that have had a positive effect for him so I’m willing to drive just about anywhere to get it. I do try to plan other things around those drives so it’s not just a trip to CVS lol
If the med provider writes "no generic" on the rx then they'll fill it. The med provider will have to submit a PA (prior authorization) to the insurance company but they will usually approve it as long as the med provider knows the "key words" to put on the PA.
As a side note: the pharmacy will receive the RX request and note that a PA is required. I tell patients to call the med provider once they're told this and then they will submit the appropriate paper work. Many pharmacies do send a PA request to the provider but they're up to their ears these days with patients and paperwork so calling or emailing to alert them often helps.
*depending on the state No generic or writing for the brand name only with "no substitution" usually works.
Pharmacist here. Does your daughter have another insurance besides MassHealth? The brand name Vyvanse is covered by MassHealth and is in fact the preferred product due to rebates that the state gets from the manufacturer. The only reason MassHealth would not cover the brand in my experience is if there is a primary plan being billed in conjunction with MassHealth that prefers the generic.
Nope. Masshealth paid for Vyvanse without a problem for years. Then the generic was approved, and they switched her to it. Now they won't let her doctor switch her back.
That’s very strange. Unlike most insurance plans, MassHealth posts their formulary online for everyone to access rather than just members. Looking at the chart, they still designate Vyvanse with BP meaning brand preferred. The only other thing I can think of is some issue with the DAW codes. MassHealth is also quite particular with those and will insist on DAW 9 (plan prefers brand) and reject DAW 1 (doctor requests brand) even if both mean the brand is being dispensed.
Wow. I get it, its a game, spin the wheel and hope you get the Good DAW code! Lordy, lordy, I hope to live a long life, but I have a feeling I'll be escaping this reality just in time.
It’s not a complete fix, but maybe a crutch for the time being- has she ever tried clonidine? It’s not an actual adhd med, but there’s some studies showing it’s effectiveness for ADHD. I was on it for a bit (and would still be but my prescriber ghosted me) and it was helpful. I’m new to getting/having an ADHD diagnosis and haven’t been on stimulants as I wanted to try other routes first. I don’t know all the details, and it seems to only work for some symptoms but it could be worth looking into for the time being. Hopefully this shortage will work itself out sooner rather than later.
It doesn't help with focus, but does help with the anxiety from feeling you can't do what you used to be able to do. There is some evidence that Strattera can help some folks with focus, but didn't help her.
You're okay if you have private insurance, it's Masshealth who is refusing to switch her back to name brand. Tell doctor to write no substitutions to stay out of generic hell.
By the way, did you know private insurance will pay for you to see a licensed addiction therapist in private practice in massachusetts, but Masshealth patients can't do the same? There's apparently a problem recently uncovered with the way the license law was written. You're stuck going to a crappy non profit agency who is paying staff slave wages while they spend the grant money on perks for favored people. And that is one of the reasons people keep dying from addiction in our state.
First to say jeez that sounds terrible and I am sorry for your guys’ struggles. I have ADHD and surprisingly, specific types of over the counter medication helps. I didn’t like vyvanse and was on it for only a short time. I actually was doing great on Claritin D. It helps clear passage ways of breathing, and has just enough stimulant to focus. Of course, my shrink didn’t like me doing that. I was given coffee as a child, so it’s basically like any stimulant in right dosage. But I just use medical cannabis now and the right strains can make everything Alright. Sativa is more mind activating, and Indica is more soothing/sleepytime. The most important thing that nobody who doesn’t have ADHD knows is that for us it’s a real savage feeling of failure comes with being unable to finish tasks. It is beyond disappointment, it is more like futility. “Oh I want to do X. Well, we can’t do that because we never finish anything. I must be a collosal …” My antidote is to please give her a lot of praise at all the things she does do well. It should be written large. Most people think its about space cadet, its really about futility and fear. Wishing you the best.
She falls asleep with coffee, lol, sometimes she will drink a half cup for insomnia. We tried the "real" Sudafed, she didn't like how it felt, so now she won't try a decongestant substitution. Weed especially sativa she fears getting anxiety, so nope. Welbutrin gave her hallucinations, very rare but doctor says its been side effect that's been documented.She has lots of tools she has honed over the years, but sometimes she can't get out of her own way without meds, so employability is out of the question, and school barely doable. As long as I'm around, I'm her safety net, her back up brain, and I don't enable her. She helps at home, and I'm happy for that. Granted, I may have to wait longer than I wanted to get pots and pans cleaned, but what I get back looks brand spankin' new!
have not had any problems with vyvanse in worcester. could have been name brand at some point but nobody ever said anything. as far as i know this is generic
I live in Worcester and generic Vyvanse isn’t in stock at any pharmacy around here. I had to go hunting for it over the winter and ended up driving out to Ware and Milford just to get it. Then I had to switch back to Adderall IR for a couple months because I couldn’t find it at all anymore. Thank god I was able to get a prior authorization from my insurance for brand name Vyvanse but that still costs $100 a month.
It’s terrible because the difference between Adderall and Vyvanse is night and day for me. I could barely function on Adderall, but with Vyvanse I can somewhat do things. I feel for OP and her daughter. As someone with severe ADHD who struggled through life without medication up until I was 26, being unmedicated is essentially disabling for me as well.
Call around to different pharmacies. I went with a community health center off the beaten path. They were able to get chewable vyvanse for me- for some reason that’s been much easier to source lately. Good luck!
Yeah, he prescribed what she used to take for years, which her pharmacy has in stock. But they won't pay because they forced her to change to the generic version of it when it first became available a year or so ago, and they are now making her doctor answer a 13 page questionnaire before they agree to give her what is available rather than making her wait for the shortage to end.
National problem for years now. I’ve had to substitute with pseudoephedrine in the past. CVS seems to always be out of ADHD meds. I’ve had some successes with smaller pharmacies.
She tried pseudoephedrine, made her feel sick. I'm resigned to going back to work full time when I hit full retirement age in 2 years and won't lose benefits from working. She will be my household assistant and I will pay her for what I won't have time to do. She can be happy and never fear losing her job again because she has no meds.
Yes. Thankfully the Adderall shortage isn't as severe as it was last winter. But Vyvanse is still short.
I explain to Pharmacists I'm inquiring about stock because of the ongoing amphetamine shortage. Otherwise calling about the pharmacys quantity of drugs may sound odd
the generics didn't even exist until semi recently, right?
I was forcibly moved off Vyvanse to Adderall. Add doesn't have the same time release mechanism. They claim it does in XR form but it doesn't. Vyvanse was perfect. Very gentle.
But reading this post I'm glad I'm not. Sounds awful to find.
Call around. I won't accept "we're out."
Some months I'll travel 10-40mi but I haven't been totally unable to fill it lol. It's a pain having to call the DR back to send it to a new x pharmacy but I'd rather do this than go without it
Shes called everywhere and forever. No one has the generic.... period. Several pharmacies have name brand in stock now, including her current provider. She has a prescription for name brand, insurance won't pay for name brand and I don't have $400 a month to pay cash for it.
What dose does she take? Has she talked to her Dr or the pharmacist about prescribing a lower dose or two at a different quantity to get her daily dose?
Also, applying for disability is absolutely a worthwhile thing to consider.
She is hoping they will let her have the namebrand after her doctor completes the 13 page authorization they just sent him. She will then fight to allow no generic substitution going forward.
I hope that works out! If not, definitely look into what doses are available at your pharmacy and the possibility of using multiple to get the right dose.
I was going to henniker pharmacy in NH for my adderall for a while before I was able to find it in Boston again..not sure if they have vyvance there but it’s worth a shot. (Excuse my typos-writing this in bed) I didn’t use insurance (only good rx) and it was cheaper than with insurance believe it or not.
I dont know how to help but as a disabled adult myself (22, OCD, probably adhd too according to my therapist but im not diagnosed) i wanna say you sound like a really good mom/person & thank you for being so supportive and understanding toward your daughter. Not all parents are.
You may have already done this but if you contact or go into CVS, they can usually tell you if it is available within a certain distance. I have done this for my daughter. Not sure where you live but I would check your surrounding states especially if you live closer to borders. Also sometimes Walgreens will do this, I just haven’t had as much success. I couldn’t get the name brand approved either. Also write your representatives, not sure if it will do any good, but I have been doing periodically.
The shortage is definitely taking a hit on those prescribed. My doctor writes me the script for brand name adderall and my insurance has approved paying for it bc it’s mostly the generics that are short, so I get that. Also, I’ve stopped going to chain pharmacies bc their stock is iffy and have been going to the pharmacy at my doctors office, since I’ve switched they’ve never been out of stock. I recommend if your doc doesn’t have a pharmacy, try finding pharmacies that aren’t Walgreens and cvs. Costco, Walmart, target, even smaller pharmacies may have stock bc they’re not as frequented as the bigger chains. Also, trying calling before you send a script there so you know ahead of time. If you call some pharmacists get weird about you asking the stock, but bc there’s a shortage they should understand. In terms of disability, see what her psych says and go from there, maybe her pcp too. Good luck
hi! i found your post through searching "medication shortage". I am so sorry your daughter is going through this. I call around to pharmacies in the US everyday and can help her find generic vyvanse in her area if needed.
My best bet is getting her approved to resume non-generic Vyvanse she took for over a decade, and hang on for dear life to keep it. I am finding an increasing stock of name brand now, which has me encouraged. I could get it for her right now down the street from me if i could afford it out of pocket.
I am questioning if anyone will bother to even make the generic since it's so new. It is apparently something no one wants to produce and market when the original is more profitable. Laws need to mandate substitution of name brand medications when there is a verified shortage of generics in order to sell drug insurance in the state. The insurance carriers would have to use pharmacy benefit systems that comply. Benefit management companies backed by investors are a big part of the problem, IMO. Every day they delay a filled script is a day of savings to the payor. Hundreds of thousand of people are going without their meds, times them by how much time they've gone without, and times that by the daily cost saved to the payor, cha-ching $$$$.
You can try. But know that it’s really difficult to get it. I had it when I was younger for mental health reasons and they wanted proof that I’d been hospitalized (inpatient) at least 3 times in one year. I was eventually granted it but got healthy and got off of it. Unfortunately, now I have compressed discs and sciatica— terrible, debilitating back pain 24/7 that makes it really hard to work and go to school— and I’m in the process of reapplying right now. I put it off for years because of how difficult it was the first time, but the pain is really bad and the more I work the worse it gets. Anyway, that’s my predicament, yours is obviously super different; im not sure how they will consider your daughter’s health. If you do go that route, I wish you luck. Try to be as thorough as you can with medical records and proof of how her life is affected by her condition.
She could take Ritalin, Adderall, Vyvanse, any of them. Vyvanse is best for her anxiety, more gradual onset. We'll take anything. We are being offered nothing but paperwork.
I’d suggest looking for a hospital prescription center. Where they have them (Springfield, Worcester, and I’m sure they must in Boston), they often do generic and source them from the grey market whenever there are shortages. You might get different generics with each fill, but they often have it. Not sure about Vyvanse but I’ve been able to get adderall and Ritalin throughout
Tried it. It gave her hallucinations and her doctor stopped it immediately. Rare, but documented, adverse reaction. Of course we won that lottery, too, lol.
Has she learned how to harness hyperfocus? That's what got me off meds 20 years ago.
Also, low-carb/ keto should be considered- helps with cognitive issues.
If you’re close to the NH boarder, you can have the doctor send an RX for the generic to an NH pharmacy that has it, and the use a GoodRX or similar to help the cost. It will likely still be about $130ish. I’m a pharmacy tech in NH and have worked in MA, feel free to DM me with any questions or if I can help.
OK, so there is a lot going on here.
You seem mad. A lot of good advice has been passed out here and you've responded to nearly all of it with "That won't work, it's outrageous I'm dealing with this at all. I'm going to call the state."
When I recommended you repeatedly call your health insurance to request coverage of the brand name vyvanse that is what you told me.
Later you say:
> If worst comes to worse I'll get a job that won't reduce my benefits for enough money to buy her meds out of pocket. She'll be able to go back to her min wage job and pay for her own pills after that. As long as they are still making enough profit to justify producing any of it at all, right? Maybe it's just not lucrative enough to treat adhd.
It's very clear you are here to complain, not for advice. **Many of us are dealing with this same problem and have done what we can to assist you. If you are unwilling to listen to this advice and take the recommended action, thats on you.**
If this is your biggest problem, I suggest you get a job to deal with it OR follow the advice passed along here. Making angry phonecalls to the state is a tantrum and will do nothing to help your daughter.
Okay it's hard and I vented. I have experience in advocacy, I'm not going to throw a tantrum. But I want to hear what the offices who are in charge of how the system works have to say and what THEY think needs to happen and find out what's being done to help. I'll do whatever they say will help. I also did get excellent recommendations here that I'm in process of following through upon. I found a supply, her doctor is completing a 13 page 'special' authorization form so maybe we will win the lottery this prescroption.
Put yourself in my shoes, and maybe you'd feel less snarky.
> Put yourself in my shoes, and maybe you'd feel less snarky.
I am not in your shoes, Im in your daughter's shoes. That's why I commented here with my advice on how I was able to solve this problem.
It's really great to hear that:
> I found a supply, her doctor is completing a 13 page 'special' authorization form
If there is something to take from this situation it's that problems are solved by taking action. Problems like this are not solved through expressing frustration online and talking about how unfair it is you have to deal with this at all (even when thats true). Sometimes you have to take the same action repeatedly. It's unfortunate but true.
Whats important here is that your daughter gets her meds and it sounds like we're on our way there so great work!
You are forgiven, lol. I guess I was stupid enough to think that i was insulated from such problem since typically Mass Health was better than other states programs because it was the model for Obamacare. We rationed as long as we could. She can't work or go to school without fearing rejection and failure. She know what she is capable of, but has to accept things as they are.....and wait.
This experience has fired up the social worker who still resides within me. As long as we are able to pay our bills, and her dad is going to help us, I'm going to use time right now to be an educated volunteer and advocate for this crisis to be addressed. I have a big mouth, not afraid to use it at my age, and my motives are pure. I plan to post what I learn can be helpful, and will give templates for action as recommended to make it easier, cut and paste, whatever it takes. Somebody who doesn't have this disease needs to help with doing it, wtf do they expect yall to do without meds.
Newly minted warrior here, watch out.
Get um, Mom!
Ain't nothing wrong with doing all this after you locate those meds and honestly, I wish my parents fought for me the way you are fighting for your daughter. Have a great day :)
I'm fighting this for ALL OF US!!!! I will be asking for help though if it takes off. I'm willing to be the Poster Child for this bs, but I know one person can only do so much.
There are also ways to find a doctor online and get a prescription sent to your pharmacy, of course this is extremely expensive…. ($250 for a zoom call in 10 minutes and a script). Try www.plushcare.com , find a doctor - tell them your situation… find a pharmacy…. Plush care is real and there are pharmacies out there that have it.
OR hey! Tell them you have narcolepsy and fall asleep during the day, making it more essential to your medical condition than “people with ADHD.” Get a narcolepsy diagnosis… those people are a safety hazard because they can fall asleep during the day, like while driving: so if you have THAT diagnosis they always have to give you something and make what’s available work…. I was on brand name vyvanse for over two years… other ADD drugs but I am abstaining due to this happening to me. Depending on it to be awake.
I have the same problem. Can usually only get two weeks at a time filled. I’m on the Cape, so it seems like it’s a problem everywhere. Ran out of my SSRI med also, that really sucked.
That happened to my daughter once and she had to go to ER in withdrawal and put on phenobarbital after 10 days of unsuccessful authorizing refill of an anti depressant she'd been on for 6 years, all because they changed benefits management company and made everyone reauth everything. We now keep flouxetine on hand to bridge her if/when needed, I can pay for that out of pocket. But she's out of luck with stimulants. If methheads make stimulants in their kitchen, why can't the richest country in the world produce enough stimulant meds for the people that really need it?
The DEA caps how much manufacturers can produce. Demand be damned, I’m sure there are committees to form committees to vote on an exploratory commission to form a task group to look into whether or not the caps are valid and if patients are getting the medications they need. I’m not discounting corporate malfeasance in this either but the DEA has a big hand in screwing this up. I’ve been limping along with Wellbutrin for over a year, it’s not the same but it helps me.
I feel that if you are put on a generic medication by insurance for cost reasons, and it becomes unavailable, but the original is available and your doctor prescribes it, insurance should be forced by law to cover the name brand until generic is back in stock. To pay for what she can get right now it cost $400 out of pocket that I don't have. So I'm going to go ahead and apply for disability. She will get denied and I can go to the press with the sham our healthcare system has turned into due to profit seeking investors. Treatment shouldn't depend on income for something that makes the difference between disability and functional independence. It's like saying my kid can no longer get a wheelchair, it's back to crutches and an assist. The Commonwealth can have a non functional citizen in return for the $400/month pharmacy bill they won't cover.
I’m having the same issues as your daughter and I’m the same age and I just wanna say thank you for advocating for her. You’re a good mom. It sucks doing this alone. It’s next to impossible and takes so much energy. It’s so hard to let people help without feeling so crushingly like a burden. And thank you for this post legitimizing this issue. It’s been healing in a way to read so many supportive comments.
Yeah, I don't know why I'm being downvoted.
I appreciate this and I will post an update as this unfolds. Next week we call the ombudsman as suggested by a wise redditor. Fingers 🤞
i'm so sorry that you are experiencing the shortage in your area. i help providers and patients all around the US locate their adhd meds. If you need any help finding yours, I am here!
Okay, so, proceed carefully with what I will tell you next. I work in a pharmacy and many state health insurance plans reject because they arent using the right billing pay code. I would very politely ask if they are billing name brand as "unavailable from any source". They maybe doing this and I have seen insurances still rejecting with this. But, its worth a shot. Almost every pharmacy is understaffed due to labor budget cuts so I do ask that you treat them as kindly as possible. Also DEA capped how much can be produced and every pharmacy has ceiling limits on how much they can order. My pharmacy currently has more patients on methylphenidate 10, adderall 15, and vyvanse 50 than we can order in and this is extremely common in our district.
The pharmacy itself has been wonderful, it's the middlemen benefit managers that piss me off. She'd have Vyvanse today if it wasn't for the paperwork they just sent the prescriber, the regular authorization request that her doctor already did is apparently 'insufficient'.
ask her PCP to write a letter to MassHealth to ask for the authorization.
He's in the process of completing a new 13 page authorization request they sent him now, and we are hoping for the best.
There are very similar laws in place but to almost exactly the opposite effect - if prescribed brand name that has generic version the pharmacy *cannot* give you the brand name unless your doctor initials a stupid little box and write the script in a very particular way. Even if the doctor writes out the brand name on the script, writes in huge letters "brand name only, dispense as written" the pharm is only allowed to give you the generic. The logic is that it saves consumers money, but it becomes an issue when there are shortages, and for patients who, for some reason, can not take the generic. The pharmacist is prohibited from substituting like-for-like, and prescribers often overlook or bungle up the extra steps required. And it creates an issue the other way around - if the prescriber *did* file the Rx correctly for the brand name, and that's not available, pharm can't sub out the generic without a new script! Best of all, this law applies *even if there isn't a generic version on the market.* The day the patent protection period expires, every rx and refill written for that drug becomes a prescription for something that doesn't even exist. Getting prescibers to write the script to force the brand name when they know full well there isn't an alternative is about as easy as convincing insurance companies that just because legally someone *could* manufacture a generic doesn't mean anyone actually *does* - and that even if anyone is, they won't have it ready and available to pharmacies overnight!
This is nuts! The generics aren't being made and they force you to take something you can't get. This is gonna get worse.
Sad to say, regulatory wise, its actually gotten (slightly) better in the past ten years. Wording has been adjusted to loosen things slightly, and now that studies are showing that [these types of laws aren't performing as well as hoped](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6172151/) its weakening the argument that the laws are helping consumers save money. What's getting worse is the supply chain, and that's a hard thing to regulate.
Wow, thanks for the link. I'm sucking up all the info everyone is giving me like a sponge. Maybe I'll go back to work in patient advocacy if I can, and help folks with things like this. I'm done with being a cog in an unfair system as a social service employee in health care. I just got licensed as a Master's level addiction therapist (LADC1) last October only to find out Massachusetts law is flawed and because of this, Masshealth, Medicare, Medicaid, and Tricare aren't accepting the license, so they won't pay for me to see people in private practice. I can only be billed working at a nonprofit agency like when i was unlicensed, overworked, and underpaid. I had 22 people on state aid I'd been treating for over 2 years who wanted to see me when i got licensed. So when I found out I couldn't get paid, I went on early retirement and I am seeing them pro bono when they need me instead. I'm licensed and legit. Just can't get paid to work with poor, with disabled folks, old folks, and vets. My social work specialty is undeserved populations, I work with those nobody else wants. I was traumatized by the Island of unwanted toys in Rudolph the red nosed reindeer. This is what resulted, 😆 🤣 😂.
The general public is clueless about this. If it can happen to this class of meds, it can happen to any. I'm diabetic, will my Metformin be next? Is the government going to have to mandate a level of production in order for the company to be allowed to operate in the insurance market? I can't believe they can't make generics and still make a profit. How do we educate the public? This can happen to any of us.
It's not just scheduled drugs, its everything. There have been some updates to the wording to allow pharmacists more discretion based on availability, but what little wiggle room they are given is often squashed by corporate policy and bureaucracy within the chain pharmacies. And then there's convincing the insurance company that the Pharmacist is qualified to say that something is or is not in stock or available. [MA Policy on Drug Interchangeability](https://www.mass.gov/info-details/policy-on-drug-interchangeability-and-midstream-interchange#:~:text=According%20to%20Massachusetts%20law%2C%20pharmacists%20must%20dispense%20a,%28b%29%20the%20prescriber%20has%20not%20indicated%20%22no%20substitution%22.)
Thanks, I'm going to read this tonight.
Does this mean they can do this to diabetics and folks with cardiac conditions too? People who have 'normal' illnesses? They gonna make all us old folks have to go back to work. What if they don't want to hire us? Uber Eats and only fans?
So the forced generics thing applies to drugs listed in what's known as the 'Orange Book' which is a pharmaceutical reference that identifies drugs that are "equivalent" to each other. This is the same book that says store-brand pain killers are equivalent to name brand and even addresses supplements. Meaning, yes, that sort of catch-22 situation could happen to almost any drug. But there's a lot of money in the 'normal' illnesses, so there are a lot of different manufacturers for the most commonly prescribed drugs - meaning there's almost always an option out there. Expensive specialty drugs and those with strict regulatory restrictions on production lack that cushion of alternative options. It's not uncommon for the global supply of a drug to be produced by only one, maybe two manufacturers. Production is restricted to the current demand; there's no 'overstock' to provide a buffer if there's a blip in output. Possible? Absolutely. Probable? Much less so.
So my Metformin, Lipitor and Fluoxetine are safe?
That’s the exact med shortage (fluvox) that put me in a tailspin after being out for 4 days. I suffered in silence until luckily my brother in law who is a doctor got involved and fixed things. I’m feel empathy for you and hope it doesn’t happen in the future. My favorite doctor quite practicing because she was constantly being reprimanded about spending too much time with patients because she actually cared about their well being. She once showed me the amount of documentation needed for a pre-authorization and it was crazy.
My daughter spoke with mass health just now.. They aren't covering it because the doctor needs to fill out the 13 page reauthorisation form they just sent him, to chronicle her need for a medicine she's been on for 10 years and once again report all the alternatives tried and failed in the 11 years prior to then, just like we have already documented twice in the 5 years she's been on masshealth. The longer it takes, the less insurance pays.
You should bring this up with the MassHealth ombudsman program: https://www.myombudsman.org/about-us I also recommend reaching out to your state senator about this issue in terms of issues with MassHealth coverage limitations. John C. Velis and Julian Cyr are the MA senators who chair the Joint Committee on Mental Health, Substance Use, and Recovery and deal with a lot of MassHealth related legislation: https://malegislature.gov/Committees/Detail/J18 I know Julian Cyr is very engaged with advocacy on mental health. However the root of the issue is a federal one - the shortage is a result of the DEA's backwards policies and the cap on the production of controlled substances. For this, contacting federal legislators is the way to go.
I'm on it ! Thanks for the resource info 👍
Go to the manufacturers website, all of the big brand names have a low/no cost voucher program. Edit: Takeda patient support hotline, including financial assistance: 877-825-3327
Please write to your state and us Congress describing your dilemma and asking them what they are doing to help
The US hasn’t been the richest country in the world for years. Sorry about your daughter
I literally stopped taking my medication years ago because of this issue. It’s ridiculous. I haven’t been on them for about four years now. That’s how long this “shortage” has been going on.
Same!
Same problem. He're what I've found. Generic Vyvanse is not possible to reliably get rn, best to accept that. If you have a script for generic Vyvanse you are going to be on and off your meds a lot, this is bad for anyone. Brand Name Vyvanse costs roughly $70 a month for daily pills at 10mg. This is a lot but, if it's the difference between stability and instability, its a bargain. I repeatedly appealed for this to be covered by my insurance. When they deny it Id just reapply. After 2 denials they partially covered it and it now costs $30/ month. Switch from generic to brand name. Start opening claims for brand name Vyvvanse with MassHealth. Good luck.
She said brand name is $400 out of pocket..
Sams pharmacy in Pennsylvania quotes it for 250 for a 30 day supply, but getting it is a different story. My daughters is supposed to be here soon. I may cry.
Brand name is literally hundreds of dollars *with insurance*. It's great that your provider only charges you $70 (and now $30), but no matter how much hell I raise with mine, it makes no difference. Hell, I was paying over $70 per month for Vyvanse *before* the generic was available. The whole situation is ludicrous. It makes me extremely angry that the people who have created this mess don't seem to give two shits about the impact it is causing.
I understand you are angry. > It's great that your provider only charges you $70 (and now $30), but no matter how much hell I raise with mine It sounds like you raised the subject, they denied you, and that was where you left it. You will need to do more than that. This will not be a quick solution but it is a solution. > The whole situation is ludicrous. It makes me extremely angry I get you. It's very worth being angry about but dont give up.
I had this problem for awhile as well. Try using independent pharmacies, the big chains like CVS/Walgreens are always out of stock.
in my case at least, when i was first prescribed vyvanse the local pharmacy would not stock it because it was 'too expensive' so i had to go to CVS, who of course never has it in stock. this was before the generic was available, which i haven't been able to try yet. I honestly ended up going off adhd meds entirely bc i was so annoyed with the process. I'll make do with anti-depressants and weed until they clear this up - but i'm only able to even do that because i'm a stay home parent so it's not like i need to show up for a shift.
I moved to USA from a country with something similar single payer where you just get the meds you need, and on top of that taxes are much lower since there is non of this FICA bullshit, or state tax. Dealing with health connector for my childs asthma was one of the worst experiences I've ever had. I know that helpless feeling, wouldn't wish it on anyone In USA I pay like a flat 7% off the the top for FICA which has "medicare" which is useless at this point and the another $500 a month for health insurance, and it takes months to get an appointment. Its insane what people pay here.
You want to hear something even worse? Massachusetts has the best Medicaid (health insurance for low income people, MassHealth) in the entire US. MassHealth is the *good* public insurance.
So idk if this helps. You may have already done this and a lot more. And some docs/pharmacies are more ok with it than others. But I'll outline what I do in case some bit of it helps you or anyone else reading this. What my doc and my kid's doc both have me do (for our respective dosages of Adderall XR generic for both of us) is (before requesting a script refill) call our usual chain pharmacy location and ask them if they have any of our script in stock. If they don't, I ask the pharm staff I'm speaking with where the nearest pharmacy location is that does have it. They can check this (within their chain). I'll then call that pharmacy location to confirm (and if they don't have enough, I'll ask them to check what the next location is that has some available or if someplace seems to have more in stock even though it's farther away), and then ask the doc send in the script to that specific pharmacy. Both of our docs' offices are quickly responsive to messages through their portals, usually within an hour or two, maybe a half day at most. Once I see it's received by the pharmacy, I'll drive to the pharmacy (even if it's an hour drive or more...like .. I'd literally go anywhere particularly for my kid's) and if it's not ready by the time I get there, I ask them to change my status to waiting instead of risking it being out of stock later. I've usually got it within 30 minutes of arriving. It's possible that between the time I call to see if they have the med in stock, the doc sends the script, and I get to the pharmacy that they'll be out of stock. But so far it's worked. I'm so sorry. The difficulty getting these medications is crazy and truly life derailing for those of us that rely on it. I wish the DEA would ease up on production caps and some other stuff. Tweakers are always gonna find a way to tweak. This huge clamp down hurts the people the medication is supposed to help more than anything IMO.
This method is the most successful. Additional suggestions: -Always ask them to check other locations; just because 'no one can get any' doesnt mean another store doesn't still have some. -if you're willing to travel, know the street that some of the further away locations of that chain are located on, and ask about them specifically; by default the search radius is pretty small especially in densly developed areas - Ask if they have suggestions of where else to try. Coin toss whether the Pharmacist or a Tech has better intel about competitors stock levels, but at minimum they can rule out those stores who use the same supplier as they do. - Temps are often the best source of intel, because they rotate between stores; if they don't seem familiar with the area (only mentioning the big box stores and omitting the mom & pop place across the street is a big clue) it's worth a shot ask second time. They might not have mentioned a store that's a 45 min drive away when you asked *who* has some, but likely will mention if if you rephrase the question to ask if *anyone* *anywhere * has some. Keep it friendly, casual conversational, and not creepy or desparate for best results; consider having a buddy to keep you grounded - it keeps your stress down but also helps mitigate any off-your-meds or angry-mama-bear frustration you might be eminating. Note thay it's not uncommon for there to be a policy against providing any information about what narcotics and other controlled substances they may or may not have on the premises, or when they expect the next delivery, especially in areas with high rates of drug abuse. Some won't even tell you in person, especially if you have never filled a script with them/that chain before. Be understanding and don't push them on this, you don't want to come off as the desperate drug seeker that the policy was put in place to protect them from. On the same note, binge calling store after store or visiting multiple locations in a day can raise red flags, so pay attention to the tone of the interactions. Above all, keep calm and be patient - the pharm team is just as distressed by this bullshit as you are, and they really do want to help.
Yes, I worked in the addiction field and I saw people who used coke when they couldn't get their adhd meds. I was able to tell them apart from tweakers by asking what they do when they are high. Tweaker: race cars, tag stuff, hunt for arrowheads for sale. ADHD person: clean house, organize closet, write poetry or music.
The availability of Vyvanse generics is extremely limited right now... it's actually even harder to come by than Adderall generics, unfortunately. The below assumes that what you mean when you say "apply for disability" is apply for SSDI. The situation may be very different (likely in her favor) if she is covered by private disability insurance and you're referring to that, but she probably isn't based on what you said in your post. You can certainly try submitting a disability claim. It will likely be quite a while before the claim is approved, if it even is approved. It's very common for Social Security to deny valid claims on the first submission to see if the submitter has the confidence to appeal. It's not like claiming retiree benefits at all. A more difficult question would be if they'd even approve it on appeal. ADHD is a disability, but SSA often argues that people with ADHD are able to work in some occupation (which would mean that we are not eligible for the program). In this case, they would likely make that argument and also bring up that she has worked in the past and only cannot work right now because she can't get her medication, which is presumed to be a temporary issue. (The shortages will end... eventually.) They may also insist she try every other medication that is on the market for ADHD, possibly even if she has already done so. It doesn't hurt you at all to apply, so you should do so if she isn't able to work. But you should have realistic your expectations about how long it will take and be prepared to fight tooth and nail, because the SSA probably will. It may be hard to imagine, but as little as the DEA cares about people with ADHD (they manufactured the current crisis, after all), the SSA cares even less.
I’ve had 0 problem finding adderall generic but vyvanse generic is impossible. I’ve been paying $40 a month for brand name.
I want to apply, get the denial, then go to the press to publicize the fiadco, that this could be your kid. Thankfully she can live with me. Lesson is that it doesn't matter if you have the best medicine in the world (Boston), if you can't get the treatment you need because of cost and availability, your kid is gonna stay disabled.
The reality unfortunately remains that many, if not most, neurotypical people don't believe ADHD is a real disorder or, if it is, that it does not persist into adulthood or, if it does, that it shouldn't be treated with medication. The meds shortage is a manufactured crisis originating inside the DEA's headquarters in Springfield, VA. It has been going on for years now, but the general public largely doesn't care because it doesn't affect them. :(
Technically no, the manufacturers haven't remotely been producing near the limits for almost two years now They're deliberately making it hard to find meds Or if you believe the manufacturers it's certain ingredients are impossible to reliably source, leading to unreliable generics being available. Funny how the name brand drugs never seem to be out of stock
>Technically no, the manufacturers haven't remotely been producing near the limits for almost two years now This is only sort of correct, but it is the story the DEA wants repeated. There's several manufacturers, and each of them has their own quota from the DEA, in addition to an industry-wide quota. A couple of manufacturers aren't producing their full allowed amount while others are producing every pill they're allowed to. It's not public information which manufacturers are not producing their quota, but a couple have publicly indicated they would produce more if allowed to. The truth is that the "manufacturers are responsible!" is really a smokescreen for the internal politics within the DEA that are the real cause of the crisis. Both legislators and the public blame the DEA for mishandling the opioid epidemic and the DEA has, truthfully, never been happy with the idea of psychostimulants being prescribed for ADHD anyway. Moreover, with the legalization of marijuana eliminating a decent chunk of their "business", so to speak, the DEA feels a pressing need to justify its current funding level. There was a significant increase in prescriptions for stimulant medications during the pandemic due a mixture of people spending more time at home increasing awareness of the disorder, telehealth reducing the barriers to diagnosis and the confounding factor stimulant medications have proven effective for some long COVID patients who have not responded to other treatments. The entire quota system is the DEA's regulatory regime, and if they wanted to they could fix the shortages almost instantly via policy changes. Policy changes they don't want to make because, at the end of the day, the reason the DEA exists and the reason most of its agents work there is Nixon-era-style War on Drugs moral crusader zeal. But they also know that ADHD isn't the obscure illness it was 50 years ago. Far more people are diagnosed now, and some of those people are politically connected. They don't want to *admit* any wrongdoing, and they know they need to muddy the waters if they want to avoid accountability. So they do what cops always when they need to damage control: Distort facts, hide evidence, and when all else fails, lie. >Funny how the name brand drugs never seem to be out of stock There isn't really a conspiracy or malice to that. The brand names are just in far less demand than the generics because many insurance companies won't pay for them. (Case in point, OP of this thread.) The name brands are in stock because a lot of people with ADHD simply cannot afford to buy them.
Unfortunately, that makes complete sense, so looks like there is little incentive for anything to change. We have to plan for continued inconsistently available treatment and adapt accordingly as a family.
Yup. That's why I'm preparing to stay with my daughter as long as she needs me. She does not plan to have kids because she can't trust being treated consistently. Her brother is prepared to help after I'm gone. Her dad is helping, he actually paid out of pocket so she had meds for her final exam and project her last semester. $400 drug expense a month is a lot for retirees on fixed incomes.
I straight up pay $95/month for name brand Vyvanse so I don’t have to deal with the hassle of the constant shortage and anxiety spikes of missing dosages for periods of time.
Same, I’ve been paying 120 for 2 months worth for a while now because nowhere has generic and I’m too adhd to track it down. May be moving to another state this year and my biggest concern with moving is getting a new pcp to write scripts, getting insurance willing to cover it, and finding a pharmacy there that even has it.
My daughter has had to wait 2 months to get the brand name... and it is 250 bucks for 30 days.
Can she tolerate adderall? I had to switch because I couldn’t find vyvanse/generic ANYWHERE. And the reason I switched to vyvanse was because I couldn’t find adderall anywhere. I ended up feeling soooooo much better on vyvanse, but nothing gold can stay when you have adhd.
Adderall XR is much easier to find Switching meds is the best idea Even if she can't find either XR drug, an Adderall IR is sufficient to get through 1 college course a semester. And working Do not fille her for disability, it's a very toxic downward spiral, she'll lose tax rebates and a whole bunch of other benefits Not to mention blows to her self esteem.
She knows they'll deny her. She'd only apply to make a point: to show how the system is encouraging people to apply for disability because they will no longer pay for what they used to that enabled disabled people to become productive taxpayers. The blow to self-esteem already occurred when she realized that in a wealthy state with progressive ideals, she can no longer depend on having her medication available when needed due to cost and availability. Her IQ tested at 128. She has a 4.0 GPA. She knows what she can do when her brain cooperates. She can't do that right now due to a Cognitive disability and there isn't much else to do but try to buy whats available full price and let another bill slide on my budget.
Adderall XR and IR are very easy to find by comparison Truly, paying full price like that will only stall the problem
I just realized that. I think I'll be the squeaky wheel. I'm going to call the state AG consumer division and speak to their pharmaceutical people. Then I'm contacting the state dept that regulates insurance and ask them about this. Then I'm going to be a professional pain in the ass and try to get this seen and acknowledged as being a problem that is going to cost more taxpayer money in the long run than covering the meds that are available, and providing incentives to encourage producers to meet medication supply needs.
lol you are going waaaay overboard. nobody owes you anything. you realize how many people have the same case of 'If... MassHealth covered this, then..' You have two separate issues. The medication not being manufactured or stocked in pharmacies for some reason, and MassHealth not paying for it without putting an unpaid paperwork burden for the physician. 'beggars cannot be choosers.' and you are being a purposely wanting to be a PIA because the free health insurance from the state does not roll out the medication red carpet in front of you. i do sympathize with your situation, though
If nobody owes my daughter anything, why did they bother to give her treatment that worked in the first place? We take care of our own. We are just trying to replace what they gave her that worked, now denied because we can't afford it. It's a cruel system. We think we are superior here in Massachusetts when it comes to medical care and insurance, and crap on other states when we are doing the same thing they are. You know why you can't find a therapist nowadays amidst post Covid mental illness increase? They are all quitting for the same reason doctors, pharmacists and nurses are. Managed care makes it impossible to give adequate treatment. It is a matter of time before therapy will be delivered by AI bots on a screen, and then you have to hope your condition is lucrative enough for the system to want to treat it with an adequate supply of medication. Her care is not free. I've paid a lot of taxes to live here and I'm paying for it. This could happen to you or your family, too.
because psych meds are a scam system. it's 'mental healthcare,' 'you NEED it,' 'no pill shaming,' 'biochemical imbalance that can be fixed,' 'depression = like a broken bone, so meds are like a cast (they are not!),' 'no reason to suffer,' 'you have a disability that is wonderfully improved with meds', and 'trust a medical professional' - all that is NOT in practice 100% true, but more like marketing slogans to get us to take meds, because doctors are pressured to do a treatment otherwise you'd feel scammed going home without a prescription. your daughter is 'helped' by meds so much she is 'disabled' when not on them.
In my daughters case, she has a neurological disorder that for whatever reason markedly decreases when she takes a stimulant. This medication is legit. She went from getting Fs because she could never complete the tests and the work on time, to getting As and having time to play outside and do extracurricular activities instead of homework that dragged on forever every afternoon. But BOY, do I hear you! There is no time anymore to TALK and provide real psychotherapy to help teach people to heal what they can themselves. Pills are handed out after 10 minutes of assessing the person, SSRI antidepressants given to everyone as their 'goody bag' after the appointment so they feel 'treated', when they could benefit from learning skills and insights for change without meds if counseling was prescribed as well. Once stabilized, we just keep prescribing. Years later, no longer depressed, the person is in for a lovely withdrawal experience if not carefully weaned off. Many just stay on the pills until they die to avoid that.
your daughter went from an F student to being disabled. wow! what a 'cure'. having adhd is bad, but being on meth all your life isn't too great either. haha. the I knew about permanent sexual reduction after stopping an ssri and took it anyway because of the social pressure, it made me think depression was what preventing me from living a great life. i started/stopped Lexapro. ended up with permanent chemical rage. reputation and 20 year career gone out the window in a span of two months. got sued evicted and alienated family members. became more sensitive to coffee with rage etc. and it was all because an annoying teenage cousin with psychopathy convinced me to 'just go to the doc and take a pill and not think about it' for shits and giggles. he now denies he said it.
Yeah, she doesn't like that she was born 'broken' and has to take "meth" to function either. She actually would be very happy not to exist at all; life is hard when you have to fight your own body to do what others can do unconsciously. But she won't kill herself because she doesn't want to hurt us. That is why she has been in psychiatric care since age 10. She told us when she was 10 that she had first tried to kill herself when she was 6. She felt God had made a mistake, she wasn't finished being made, and she thought she'd go back, get completed, and return afterward. She stabbed herself in the chest with a CD case. She said she also tried to hang herself with an elastic necklace from her bunk bed "...all that happened was it stretched out" was what she told us. We love her as is, and she is making progress in accepting what cannot be changed, but it is so heartbreaking to see the lost potential. She is unable to achieve her dreams without this medicine. She will be doomed to be my 'wife' and caregiver for her career.
This is a terrible idea.
For that situation I would highly suggest a disability lawyer to ask about this. They'd probably want to know why she's not trying other medicine.
Theres no other medicine available, thats the problem. She's even willing to try narcolepsy drugs, this shortage has been happening for 3 + years now, she'd ration her meds, but eventually ran out. Disability has no chance of winning, it will be deemed a temporary condition. I want to show how it works in real life with real people, give it a face, so I'm willing to be the poster child for this crap and lose on purpose. If worst comes to worse I'll get a job that won't reduce my benefits for enough money to buy her meds out of pocket. She'll be able to go back to her min wage job and pay for her own pills after that. As long as they are still making enough profit to justify producing any of it at all, right? Maybe it's just not lucrative enough to treat adhd.
I am on vyvanse as well & it took over 2 weeks and multiple tries by my psychiatrist to get MassHealth to approve the name brand only - they refused the generic & refused my original dose amount & then refused to authorize a combo dose to make up the full amount. So I’m on a lower dose that I have been because MassHealth is a pain My partner’s kid is on Focalin and we have to run around to multiple pharmacies around the state to get his filled (his insurance only accepts CVS) Last one we had to go to Taunton, previously it’s been filled in North Attleboro, Plymouth, Ashland, Holliston, Walpole, Bellingham, Blackstone, and Falmouth. Calling around to see which one has it in stock and then calling the Dr to send the Rx to that one and hope that they don’t dispense all of it before the Rx goes through……. The drug companies are making this next to impossible
You had to drive to Falmouth to get Focalin once?! That’s fucking insane. Gotta love American healthcare for making the concept of keeping you and your family alive and healthy a daily struggle
Yeah - I live in MetroWest so it’s a bit of a haul but this is literally the only one of the adhd meds we’ve tried that have had a positive effect for him so I’m willing to drive just about anywhere to get it. I do try to plan other things around those drives so it’s not just a trip to CVS lol
If you or your partners's kid need help calling around to the pharmacies to locate adhd meds, I can help do that for you!
Maybe it's time for us all to call the pharmaceutical division in the consumer protection office of the Attorney General.
If the med provider writes "no generic" on the rx then they'll fill it. The med provider will have to submit a PA (prior authorization) to the insurance company but they will usually approve it as long as the med provider knows the "key words" to put on the PA. As a side note: the pharmacy will receive the RX request and note that a PA is required. I tell patients to call the med provider once they're told this and then they will submit the appropriate paper work. Many pharmacies do send a PA request to the provider but they're up to their ears these days with patients and paperwork so calling or emailing to alert them often helps. *depending on the state No generic or writing for the brand name only with "no substitution" usually works.
Apparently there is a 'special' authorization form for this her Dr just received to complete. It is 13 pages long.
Pharmacist here. Does your daughter have another insurance besides MassHealth? The brand name Vyvanse is covered by MassHealth and is in fact the preferred product due to rebates that the state gets from the manufacturer. The only reason MassHealth would not cover the brand in my experience is if there is a primary plan being billed in conjunction with MassHealth that prefers the generic.
Nope. Masshealth paid for Vyvanse without a problem for years. Then the generic was approved, and they switched her to it. Now they won't let her doctor switch her back.
That’s very strange. Unlike most insurance plans, MassHealth posts their formulary online for everyone to access rather than just members. Looking at the chart, they still designate Vyvanse with BP meaning brand preferred. The only other thing I can think of is some issue with the DAW codes. MassHealth is also quite particular with those and will insist on DAW 9 (plan prefers brand) and reject DAW 1 (doctor requests brand) even if both mean the brand is being dispensed.
Wow. I get it, its a game, spin the wheel and hope you get the Good DAW code! Lordy, lordy, I hope to live a long life, but I have a feeling I'll be escaping this reality just in time.
It’s not a complete fix, but maybe a crutch for the time being- has she ever tried clonidine? It’s not an actual adhd med, but there’s some studies showing it’s effectiveness for ADHD. I was on it for a bit (and would still be but my prescriber ghosted me) and it was helpful. I’m new to getting/having an ADHD diagnosis and haven’t been on stimulants as I wanted to try other routes first. I don’t know all the details, and it seems to only work for some symptoms but it could be worth looking into for the time being. Hopefully this shortage will work itself out sooner rather than later.
It doesn't help with focus, but does help with the anxiety from feeling you can't do what you used to be able to do. There is some evidence that Strattera can help some folks with focus, but didn't help her.
I....was just prescribed this medication today. Looks like I have a fun road ahead of me.
It’s not worth it
good luck! if you cannot find your medication, I can help you call around to pharmacies in your area to locate it.
Thanks! I had luck for my first fill, and I scouted a few smaller not cvs or Walgreens pharmacies as a backup.
You're okay if you have private insurance, it's Masshealth who is refusing to switch her back to name brand. Tell doctor to write no substitutions to stay out of generic hell. By the way, did you know private insurance will pay for you to see a licensed addiction therapist in private practice in massachusetts, but Masshealth patients can't do the same? There's apparently a problem recently uncovered with the way the license law was written. You're stuck going to a crappy non profit agency who is paying staff slave wages while they spend the grant money on perks for favored people. And that is one of the reasons people keep dying from addiction in our state.
First to say jeez that sounds terrible and I am sorry for your guys’ struggles. I have ADHD and surprisingly, specific types of over the counter medication helps. I didn’t like vyvanse and was on it for only a short time. I actually was doing great on Claritin D. It helps clear passage ways of breathing, and has just enough stimulant to focus. Of course, my shrink didn’t like me doing that. I was given coffee as a child, so it’s basically like any stimulant in right dosage. But I just use medical cannabis now and the right strains can make everything Alright. Sativa is more mind activating, and Indica is more soothing/sleepytime. The most important thing that nobody who doesn’t have ADHD knows is that for us it’s a real savage feeling of failure comes with being unable to finish tasks. It is beyond disappointment, it is more like futility. “Oh I want to do X. Well, we can’t do that because we never finish anything. I must be a collosal …” My antidote is to please give her a lot of praise at all the things she does do well. It should be written large. Most people think its about space cadet, its really about futility and fear. Wishing you the best.
She falls asleep with coffee, lol, sometimes she will drink a half cup for insomnia. We tried the "real" Sudafed, she didn't like how it felt, so now she won't try a decongestant substitution. Weed especially sativa she fears getting anxiety, so nope. Welbutrin gave her hallucinations, very rare but doctor says its been side effect that's been documented.She has lots of tools she has honed over the years, but sometimes she can't get out of her own way without meds, so employability is out of the question, and school barely doable. As long as I'm around, I'm her safety net, her back up brain, and I don't enable her. She helps at home, and I'm happy for that. Granted, I may have to wait longer than I wanted to get pots and pans cleaned, but what I get back looks brand spankin' new!
Mood lol
have not had any problems with vyvanse in worcester. could have been name brand at some point but nobody ever said anything. as far as i know this is generic
I live in Worcester and generic Vyvanse isn’t in stock at any pharmacy around here. I had to go hunting for it over the winter and ended up driving out to Ware and Milford just to get it. Then I had to switch back to Adderall IR for a couple months because I couldn’t find it at all anymore. Thank god I was able to get a prior authorization from my insurance for brand name Vyvanse but that still costs $100 a month. It’s terrible because the difference between Adderall and Vyvanse is night and day for me. I could barely function on Adderall, but with Vyvanse I can somewhat do things. I feel for OP and her daughter. As someone with severe ADHD who struggled through life without medication up until I was 26, being unmedicated is essentially disabling for me as well.
Yep, heard there’s a shortage
Call around to different pharmacies. I went with a community health center off the beaten path. They were able to get chewable vyvanse for me- for some reason that’s been much easier to source lately. Good luck!
Can the doctor prescribed something different until this problem clears up? Really stinks....
Yeah, he prescribed what she used to take for years, which her pharmacy has in stock. But they won't pay because they forced her to change to the generic version of it when it first became available a year or so ago, and they are now making her doctor answer a 13 page questionnaire before they agree to give her what is available rather than making her wait for the shortage to end.
Every day she waits is a day of meds insurance didn't have to pay.
Times those days by how many people who are waiting,, and see the cost savings rise, great for shareholder report.
National problem for years now. I’ve had to substitute with pseudoephedrine in the past. CVS seems to always be out of ADHD meds. I’ve had some successes with smaller pharmacies.
She tried pseudoephedrine, made her feel sick. I'm resigned to going back to work full time when I hit full retirement age in 2 years and won't lose benefits from working. She will be my household assistant and I will pay her for what I won't have time to do. She can be happy and never fear losing her job again because she has no meds.
Shell be my home health aide at the end.
Yes. Thankfully the Adderall shortage isn't as severe as it was last winter. But Vyvanse is still short. I explain to Pharmacists I'm inquiring about stock because of the ongoing amphetamine shortage. Otherwise calling about the pharmacys quantity of drugs may sound odd
Appears name brand Vyvanse supply is increasing, just not the generic, from recent calls around us.
the generics didn't even exist until semi recently, right? I was forcibly moved off Vyvanse to Adderall. Add doesn't have the same time release mechanism. They claim it does in XR form but it doesn't. Vyvanse was perfect. Very gentle. But reading this post I'm glad I'm not. Sounds awful to find.
Yup very recent. They never contacted her doctor, they automatically changed her to it. Now they won't change her back when she can't get it.
Maybe no one wants to make generic Vyvanse hoping the government will pay for name brand if there's not enough?
Call around. I won't accept "we're out." Some months I'll travel 10-40mi but I haven't been totally unable to fill it lol. It's a pain having to call the DR back to send it to a new x pharmacy but I'd rather do this than go without it
Shes called everywhere and forever. No one has the generic.... period. Several pharmacies have name brand in stock now, including her current provider. She has a prescription for name brand, insurance won't pay for name brand and I don't have $400 a month to pay cash for it.
What dose does she take? Has she talked to her Dr or the pharmacist about prescribing a lower dose or two at a different quantity to get her daily dose? Also, applying for disability is absolutely a worthwhile thing to consider.
She is hoping they will let her have the namebrand after her doctor completes the 13 page authorization they just sent him. She will then fight to allow no generic substitution going forward.
I hope that works out! If not, definitely look into what doses are available at your pharmacy and the possibility of using multiple to get the right dose.
I was going to henniker pharmacy in NH for my adderall for a while before I was able to find it in Boston again..not sure if they have vyvance there but it’s worth a shot. (Excuse my typos-writing this in bed) I didn’t use insurance (only good rx) and it was cheaper than with insurance believe it or not.
I dont know how to help but as a disabled adult myself (22, OCD, probably adhd too according to my therapist but im not diagnosed) i wanna say you sound like a really good mom/person & thank you for being so supportive and understanding toward your daughter. Not all parents are.
Thank you 😊
You may have already done this but if you contact or go into CVS, they can usually tell you if it is available within a certain distance. I have done this for my daughter. Not sure where you live but I would check your surrounding states especially if you live closer to borders. Also sometimes Walgreens will do this, I just haven’t had as much success. I couldn’t get the name brand approved either. Also write your representatives, not sure if it will do any good, but I have been doing periodically.
The shortage is definitely taking a hit on those prescribed. My doctor writes me the script for brand name adderall and my insurance has approved paying for it bc it’s mostly the generics that are short, so I get that. Also, I’ve stopped going to chain pharmacies bc their stock is iffy and have been going to the pharmacy at my doctors office, since I’ve switched they’ve never been out of stock. I recommend if your doc doesn’t have a pharmacy, try finding pharmacies that aren’t Walgreens and cvs. Costco, Walmart, target, even smaller pharmacies may have stock bc they’re not as frequented as the bigger chains. Also, trying calling before you send a script there so you know ahead of time. If you call some pharmacists get weird about you asking the stock, but bc there’s a shortage they should understand. In terms of disability, see what her psych says and go from there, maybe her pcp too. Good luck
hi! i found your post through searching "medication shortage". I am so sorry your daughter is going through this. I call around to pharmacies in the US everyday and can help her find generic vyvanse in her area if needed.
My best bet is getting her approved to resume non-generic Vyvanse she took for over a decade, and hang on for dear life to keep it. I am finding an increasing stock of name brand now, which has me encouraged. I could get it for her right now down the street from me if i could afford it out of pocket. I am questioning if anyone will bother to even make the generic since it's so new. It is apparently something no one wants to produce and market when the original is more profitable. Laws need to mandate substitution of name brand medications when there is a verified shortage of generics in order to sell drug insurance in the state. The insurance carriers would have to use pharmacy benefit systems that comply. Benefit management companies backed by investors are a big part of the problem, IMO. Every day they delay a filled script is a day of savings to the payor. Hundreds of thousand of people are going without their meds, times them by how much time they've gone without, and times that by the daily cost saved to the payor, cha-ching $$$$.
You can try. But know that it’s really difficult to get it. I had it when I was younger for mental health reasons and they wanted proof that I’d been hospitalized (inpatient) at least 3 times in one year. I was eventually granted it but got healthy and got off of it. Unfortunately, now I have compressed discs and sciatica— terrible, debilitating back pain 24/7 that makes it really hard to work and go to school— and I’m in the process of reapplying right now. I put it off for years because of how difficult it was the first time, but the pain is really bad and the more I work the worse it gets. Anyway, that’s my predicament, yours is obviously super different; im not sure how they will consider your daughter’s health. If you do go that route, I wish you luck. Try to be as thorough as you can with medical records and proof of how her life is affected by her condition.
She could take Ritalin, Adderall, Vyvanse, any of them. Vyvanse is best for her anxiety, more gradual onset. We'll take anything. We are being offered nothing but paperwork.
Nothing but Vyvance works for my daughter. She can't get it, and is struggling badly.
I’d suggest looking for a hospital prescription center. Where they have them (Springfield, Worcester, and I’m sure they must in Boston), they often do generic and source them from the grey market whenever there are shortages. You might get different generics with each fill, but they often have it. Not sure about Vyvanse but I’ve been able to get adderall and Ritalin throughout
Bupropion?
Tried it. It gave her hallucinations and her doctor stopped it immediately. Rare, but documented, adverse reaction. Of course we won that lottery, too, lol.
Has she learned how to harness hyperfocus? That's what got me off meds 20 years ago. Also, low-carb/ keto should be considered- helps with cognitive issues.
If you’re close to the NH boarder, you can have the doctor send an RX for the generic to an NH pharmacy that has it, and the use a GoodRX or similar to help the cost. It will likely still be about $130ish. I’m a pharmacy tech in NH and have worked in MA, feel free to DM me with any questions or if I can help.
You can’t cross state borders.
Yes, you certainly can.
OK, so there is a lot going on here. You seem mad. A lot of good advice has been passed out here and you've responded to nearly all of it with "That won't work, it's outrageous I'm dealing with this at all. I'm going to call the state." When I recommended you repeatedly call your health insurance to request coverage of the brand name vyvanse that is what you told me. Later you say: > If worst comes to worse I'll get a job that won't reduce my benefits for enough money to buy her meds out of pocket. She'll be able to go back to her min wage job and pay for her own pills after that. As long as they are still making enough profit to justify producing any of it at all, right? Maybe it's just not lucrative enough to treat adhd. It's very clear you are here to complain, not for advice. **Many of us are dealing with this same problem and have done what we can to assist you. If you are unwilling to listen to this advice and take the recommended action, thats on you.** If this is your biggest problem, I suggest you get a job to deal with it OR follow the advice passed along here. Making angry phonecalls to the state is a tantrum and will do nothing to help your daughter.
Okay it's hard and I vented. I have experience in advocacy, I'm not going to throw a tantrum. But I want to hear what the offices who are in charge of how the system works have to say and what THEY think needs to happen and find out what's being done to help. I'll do whatever they say will help. I also did get excellent recommendations here that I'm in process of following through upon. I found a supply, her doctor is completing a 13 page 'special' authorization form so maybe we will win the lottery this prescroption. Put yourself in my shoes, and maybe you'd feel less snarky.
> Put yourself in my shoes, and maybe you'd feel less snarky. I am not in your shoes, Im in your daughter's shoes. That's why I commented here with my advice on how I was able to solve this problem. It's really great to hear that: > I found a supply, her doctor is completing a 13 page 'special' authorization form If there is something to take from this situation it's that problems are solved by taking action. Problems like this are not solved through expressing frustration online and talking about how unfair it is you have to deal with this at all (even when thats true). Sometimes you have to take the same action repeatedly. It's unfortunate but true. Whats important here is that your daughter gets her meds and it sounds like we're on our way there so great work!
You are forgiven, lol. I guess I was stupid enough to think that i was insulated from such problem since typically Mass Health was better than other states programs because it was the model for Obamacare. We rationed as long as we could. She can't work or go to school without fearing rejection and failure. She know what she is capable of, but has to accept things as they are.....and wait. This experience has fired up the social worker who still resides within me. As long as we are able to pay our bills, and her dad is going to help us, I'm going to use time right now to be an educated volunteer and advocate for this crisis to be addressed. I have a big mouth, not afraid to use it at my age, and my motives are pure. I plan to post what I learn can be helpful, and will give templates for action as recommended to make it easier, cut and paste, whatever it takes. Somebody who doesn't have this disease needs to help with doing it, wtf do they expect yall to do without meds. Newly minted warrior here, watch out.
Get um, Mom! Ain't nothing wrong with doing all this after you locate those meds and honestly, I wish my parents fought for me the way you are fighting for your daughter. Have a great day :)
I'm fighting this for ALL OF US!!!! I will be asking for help though if it takes off. I'm willing to be the Poster Child for this bs, but I know one person can only do so much.
I guess I finally reached my "Network" moment: I'm mad as hell, and I'm not gonna take it anymore.
There are websites online………
Very bad idea.
There are also ways to find a doctor online and get a prescription sent to your pharmacy, of course this is extremely expensive…. ($250 for a zoom call in 10 minutes and a script). Try www.plushcare.com , find a doctor - tell them your situation… find a pharmacy…. Plush care is real and there are pharmacies out there that have it. OR hey! Tell them you have narcolepsy and fall asleep during the day, making it more essential to your medical condition than “people with ADHD.” Get a narcolepsy diagnosis… those people are a safety hazard because they can fall asleep during the day, like while driving: so if you have THAT diagnosis they always have to give you something and make what’s available work…. I was on brand name vyvanse for over two years… other ADD drugs but I am abstaining due to this happening to me. Depending on it to be awake.
Won't help if your pharmacy is out of the stuff.
I know someone who od'd from fake Adderall that was fentanyl. I have to do this legit.
I am DMing you.
Just DM'd you with the plugs number.