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?
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.
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.
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.
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.
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).
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.