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I'm my older brother's POA and caregiver. He's 73 and on the autism spectrum. He can live independently and is capable of personal care...he lives in a small apartment a block away from us. But he has a lot of trouble intellectually; therefore I have to handle all of his legal, financial and medical affairs. He doesn't drive, and in any case I have to be present at all of his medical appts because he doesn't explain anything fully and doesn't understand instructions from his doctors.



Six weeks ago his dermatologist prescribed Dupixent for a severe rash all over his body that was determined through a biopsy to be eczema. He staunchly refuses to inject himself so that's become yet another of my responsibilities. His prescription drug plan approved the medication but his copay was $1260/month. His only source of income is $927/month from Social Security. He receives Section 8 rent subsidy from the state of NJ and Meals on Wheels from our town.



I applied on his behalf for financial assistance directly from Dupixent (Dupixent MyWay program) six weeks ago. When I failed to hear from them for two weeks I called to follow up and were told that they hadn't received a specific piece of information from the provider. After advising the provider of what they needed I called once a week to follow up on the status of the application. Each time I called a case worker told me they needed something else: a copy of the POA naming me as his agent, proof of income, a new Rx from the provider. None of this is stated in the application and no one ever told me any of this was required. If I hadn't called multiple times to follow up I never would have known they needed this and the application would still be in limbo.



Last week Dupixent confirmed they had everything they needed and would process the application. I called to follow up this morning and was informed that my brother's application had been declined because law mandates that he apply for low income benefits through the state first. Again, this doesn't appear on the application and was NEVER once communicated to me.



So we've wasted six weeks and now I have to start over with a state benefit program -- and if you're familiar with gvt bureaucracy it'll take months for an answer. Meanwhile, my brother has used up the free samples from the dermatologist and they can't give us more. Each dose is about $4k.



Dupixent refused to let me escalate the matter and I have no idea how to proceed besides applying for the state benefits. Has anyone else experienced this runaround from Dupixent and have any suggestions on next actions?

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Dupixent falls into the "mab" category of medications, Dupilumab in this case. It may be a blessing in disguise that the finances are being turned down for this medication bc the side effects should be researched beforehand. I took 2 treatments of 2 different immunotherapy "mabs" and am now suffering a long term audiovestibular toxicity reaction that has me so dizzy I can't walk unassisted. For 13 weeks now with no end in sight, and no "cures" have done a doggone thing to help me.

Please Google Dupixent to learn about the possible side effects your brother can encounter from these injections, and to see if an alternative solution is available. These things are never an issue until they become an issue.....and your brother already has a lot on his plate to deal with as it is. The doctors never really give us the FULL picture of just how dangerous these "mabs" can be! Me, I have stage 4 melanoma so I had no other choice. Your brother has other choices that may be safer than a "mab".

Best of luck to you both.
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AlvaDeer May 2023
I couldn't agree more with not taking these heavy guns if something more tested will work at all. I caution people all the time to listen to the side effects they talk about in the ads where the people are happily running along the beach while a calm voice competes with gentle music to tell you the many ways you can DIE from this drug. I hope OP does a lot of research before demanding this drug, and also considers what I said below about the MD incentive to order these drugs because of kickbacks still existing from the drug companies. It is one of the reasons I am happy to be on Kaiser. I know if they are ordering an expensive drug, they really believe it works. I admit there are DOWNSIDES to this model, as well, which are the downsides existent in the UK's NH model. It's all a gamble. And anyone's guess.
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I don't know that this will work for you but I see a neurologist affiliated with a major local hospital that has an in house pharmacy. I have multiple types of medications for migraines. Several are newer on the market and the doctor puts in a request for them to be free as the co-pays would be exorbitant. Could the dermatologist suggest anything to help your brother in this situation? I also don't understand why he couldn't continue to provide samples. Have you pleaded the case to the doctor?
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Aren't there other medicines for eczema that are available in generic?
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I am so sorry u went thru all of this. Its a shame your brother is the age he is. I was able to put my deceased sisters life insurance money into a Medicaid Special Needs Trust for my nephew so he could get Medicaid. I think 65 is the cutoff for a Special Needs Trust but would not hurt to check it out with an Elder lawyer. There are limitations and when he passes, it reverts to Medicaid. They take what they put out snd the beneficiary gets the rest.

If I were you I would get your brother a formal diagnosis. He will need to spend down the house proceeds to get any type of help. Once he does, you maybe able to get him SSI which is a Supplimental income. (It will effect what he pays towards his rent) He will also get Medicaid.

Call your County Disabilities Dept and see if they can evaluate your for autism. It should cost him nothing. You may find out there are resources for him out there.

I live in NJ and have been able to get my nephew help and I have made a lot of calls for him. I am also 73 and I remember how challenged children were treated. Put in a room with a teacher and their challenges were not dealt with. It was how it was. I always wonder if those kids got the help then thats available now where they would be.
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I'm more ticked off at the hoops Dupixent made me jump through for six weeks before ultimately declining my brother's application. There's no mention of the documentation they claimed was required on the application or their website, and they never contacted me to request that information. If I hadn't made multiple calls to them to follow up I would never have known what they needed. Could I have asked? I guess, but all this is new to me and I naively thought they'd help us through the application process. Yet another example of the need to thoroughly do my research and staying on top of everything.

The dermatologist prescribed Dupixent because it was the safest non-topical alternative. The strongest cream required a $300 copay after insurance, which was out of the question, and none of the affordable alternatives (at a $60 copay) worked. Dupixent is working, but we're out of options except to apply to the state for help, and that can take months.
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Your biggest "mistake" may have been trying to get on the program on your own. I went through a similar path with a relative but was fortunate that a hospital social worker who was familiar with ALL the requirements (based on her experience with other patients) was able to get or request from me all needed the paperwork together. Still took about 3 weeks to get an approved app and about 4 weeks to receive the medication.

If you cannot get a hospital social worker to assist, I would suggest trying to make contact with a social worker or other person focused on medication issues with the Area Agency on Aging, senior center, or sometimes a doctor's office that sees a lot of elderly people.
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TSPiggy98 May 2023
Agree that trying to do this on my own was a huge mistake. Unfortunately I don't know anyone who could have helped, and it's nearly impossible to get through to our area's agency on aging. Anything on the state level...well, good luck.
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I'm more ticked off at the hoops Dupixent made me jump through for six weeks before ultimately declining my brother's application. There's no mention of the documentation they claimed was required on the application or their website, and they never contacted me to request that information. If I hadn't made multiple calls to them to follow up I would never have known what they needed. Could I have asked? I guess, but all this is new to me and I naively thought they'd help us through the application process. Yet another example of the need to thoroughly do my research and staying on top of everything.
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So ridiculous! You may want to circle back to the prescribing doctor, ask what else can be used. Dupixent is a shiny new drug that doesn't have a generic (hence the astronomical price); but eczema HAS been successfully treated before it came along lol. It's not even listed on GoodRx, one of the first prescription discount websites. SingleCare offers a whooping 1/2 of pricing of around $3500 smh

It would be wonderful if you could get the State to move on an emergency basis without living on the phone for 2 weeks; but it may be better to ask the doctor for something else, even if it means a more complex treatment plan (multiple prescriptions for internal and topical use).
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TSPiggy98 May 2023
That's my next phone call to the dermatologist to see if there's an affordable alternative. The strongest topical creams/ointments didn't work. The doctor didn't want to prescribe other meds because they require monthly blood work to monitor his liver and kidney functions. Dupixent was deemed to be the safest treatment, and so far it's working. But when this month's free samples from the doctor run out he's stuck.
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Is your brother not on Medicaid? Was he not getting SSDI and Medicaid before he turned 65?
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TSPiggy98 May 2023
He doesn't qualify for Medicaid, as he inherited half the proceeds from the sale of our parents' house after they passed (six figures). He didn't qualify for SSDI because he never received an official diagnosis. Our parents simply labeled him as "slow" and did everything for him. I work with kids on the spectrum so I'm familiar with the characteristics and he clearly matches them. He's bright but has a childlike mentality. All of his doctors have acknowledged that he's definitely special needs but none have taken it further.
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The sad truth is that the company doesn't HAVE to give you the prescription at lower cost. It is a program they provide, and let's face it, no one can afford 1,200 a month for eczema creme. Or let us say no one but those who are quite wealthy.

The sad truth is that after all you have done, all the hoops you have made your way through, the answer is NO. And there's little to be done about that other than giving the company a bit of bad publicity, and they don't care.

It sadly looks as though your dermatologist is going to have to order a cream that has passed out of that patent protection time when they can charge whatever they like but no generic can copy their formula. I can only be glad that this is about eczema and not about a life threatening disease for which you cannot afford help. Drug costs are a horrible part of health care problem in our country and I am so sorry to see this happening for you. I wish I had better news; I hope someone else has a better answer for you.

There is only one good piece of news here, and that is that often new drugs turn out to be no better (and just occ. worse) than old drugs. Doctors STILL get often as much as 6% of prescription costs for prescribing new drugs; they have an incentive there that they will deny, telling you "We don't do that anymore". They do. I hope that you will find something that works.
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