ACCESS TO EXPENSIVE MS TREATMENTS

I am new to this site, so I would like to introduce myself. I am a retired lawyer with Relapsing MS. I was diagnosed 6 years ago. My current disease modifying therapy is Tecfidera, and it seems to be a good fit. I use Acthar Gel for relapses. My biggest concern is the expense of these medications. While the drug companies offer financial help, I am unable to receive it because I am on Medicare Part D, and the Social Security Act prohibits drug companies from providing assistance to patients on government-assisted prescription plans. Accordingly, many people with rare or orphan diseases cannot get their lifesaving medications. Is anyone else caught in this trap??

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  • Hi i to am on an very expensive medication for my ms and also on Medicare but I have a plan through BC/BS that's a Medicare advantage plan and I do receive financial assistance the drug company referred me to called The Health Well Foundation out of Gathersburg ,MD they are great and very nice folks it takes about a 15-20 minute phone call to see if you qualify and once you qualify it works kind of like a secondary insurance they call grants, and they even have a web site you can track the status of your grant money and see if the bills are getting paid and so on, might be worth a call to see if the can help if you're interested let me know and I'll give you the number

  • Hi, Georgeinwv. I was referred to the Health Well Foundation as well to help with the astronomical co-insurance for my meds but they turned me down because they figure the household income, and between my husband's SSDI (he was disabled by a stroke in 2005) and my SSDI, plus our private disability policies, we make too much money and thus do not qualify. The other problem is that not all such charities cover all medications. So I just ended up paying $6,000 for one of my meds, and we can't keep doing that. The whole problem is caused by a stupid loophole in the Social Security Act that has to be amended by Congress so that those of us on government-assisted plans can get direct help from the drug companies. I have started a petition on Change.org to get Congress to amend the Social Security Act to close the loophole which prevents those of us on government-assisted prescription plans such as Medicare Part D from getting the assistance we need from the drug companies. I am going to figure out how to embed the link on this website so everyone can sign it. I have also been working with my Congressional representative trying to get her to sponsor such a bill. Will keep you informed.

  • Wow I am so sorry to hear that, trust me I understand how expensive this can get,my monthly Tysabri treatments cost

    $11,.000.00/mo and that's for the meds the cost for the infusion center and the incidentals for same, now my insurance picks up part of the cost the foundation picks up another part but at the end I am still stuck with a balance of nearly $1000.00 a month so yes we too are nearly bankrupt from this, and every month I have to sit down and figure out what other meds I can do without for the month and so on, at this rate we are going to loose everything.

    I wouldn't even take the treatments if they didn't help but they do, I was on Copaxone and had violent reactions from that, tried Tecfedra has serious stomach reactions from that so the doctor said it was either Tysabri or nothing but I had no idea how expensive it was until I had to force the hospital to give me an itemized statement and I nearly fainted. But just keep the faith if I hear of anything else that might help I'll pass it on

  • That does not make sense. I just got on ABD. I do not have any copay's what so ever. Plus I get SSD. I don't think MS is a rare or orphan disease. Also I have medical because my ex husband divorce me after 33 yrs of marriage.

  • MS is not an orphan disease but it is classified as rare. I also get SSDI, and you are very lucky if you medical insurance includes prescription drugs. Because I lost my medical insurance which included prescription drugs when the Affordable Care Act became effective, I had to get an ACA policy through the exchange. While I had been planning to use my medical insurance policy as my Medigap policy when I became Medicare eligible, you cannot do that with an ACA policy, so I was forced to take a Part D plan.

  • Hello Sukie427

    I am not quite there yet (Medicare this year) but I have been concerned about the same thing. I have chosen not to bankrupt my family so I am teaching myself to do without the medications. I have been able to drop off quite a few with only minor problems. I have been on Copaxone since 2008. It has not really done anything and I have had a steady slow decline since being diagnosed in 2008. I will post how it goes.

  • i was dg. in '01 and had just gotten out of college. i did not have rx coverage and then, bam, i get dg. w. ms! at the time ms was considered rare as i got help from nord. i do not think it's rare anymore. also got a lot of help from drug companies. i am sure things have changed! before turning 30 i was on medicare plus a secondary which totally covers almost everything but does leave me broke. i live in ma. and also get masshealth which has been helpful. it feels like a catch 22. i am a renter, can't afford to save anything and ssdi puts me around the poverty level. ssdi has infrequent cost of living increases. and the little money i saved when i did work disqualifies me for food stamps! but my student loans were forgiven. and i have significant cognitive issues - it is mind boggeling.

  • Hi, nes78. You are correct, it is mind-boggling. If your secondary insurance is private and covers prescriptions, then you can get all the help you need from the drug companies. Medicare Parts A and B don't cover prescriptions. If you don't have prescription coverage on your secondary insurance, then you have to get a Medicare Part D plan, and that's where the problems come in. And at your income level, even if you have Part D, any co-insurance or co=pay can be picked up by a charity if one has funding and covers your particular medication.

  • Nice to meet a fellow attorney with MS. Wish neither of us had MS. What I recommend you try, since you are retired, and on Medicare, go to your local Department of Social Services. Ask to apply for the Medicare Savings Program. Your social security check may disqualify you from some of the benefits of the MSP, however you should still qualify for the prescription benefits. The prescriptions benefits cap your brand and generic prescriptions to under $10 a piece. You may also find your Medicare premium is paid for under the program too.

  • G'day All,

    You are lucky you are not in Australia. I have PPMS and there are no approved treatments for it here except Baclofen for spasm (ineffective which is why most spinal patients smoke dope). The makers of Ibudilast and Ocrelisumab are not even considering the Australian market because it is too small.

    The main cause of delays in the availability of these treatments now is our out dated

    and corrupted regulatory systems. In Australia the Therapeutic Goods Administration

    (TGA) will only consider whether to approve a drug if the “sponsor” (the company making

    it) “…applies and supplies supporting documentation.” This and 1960’s attitudes to

    drugs that have been used recreationally is why so many symptomatic treatments like

    Sativex are available in countries such as the USA, Canada, the UK, Spain and New

    Zealand but not here.

    My experience since diagnosis of Primary Progressive Multiple Sclerosis (PPMS) 7 years

    ago has convinced me that our regulatory system for approval of medical treatments

    involving drugs is in serious need of reform. It was originally conceived as a

    protection for the public against snake oil salesmen but the industry was quick to

    realize that this could be a restriction on profits and they have been very successful

    in debasing it. It has become a system that can be used by industry and governments to

    corruptly increase profits.

    I have participated in a phase 3 trial of Fingolimod (Gilenya) for 3 years and it has

    become obvious that this was a strategy to manipulate the system to extend Novartis’s

    patent for, at least, 7 years. You may be aware that this drug was approved for other

    types of MS in 2008. Had PPMS been included in the trials at that time it would have

    been available, or been shown to be ineffective then. Given that they conducted a phase

    3 trial, and that this trial was been extended twice for a year each time, it would

    appear that an effect was demonstrated. By excluding 10% of their ‘market’ they have

    been able to sell it to 90% of their ‘market’ at $3000/28 days worth for 7 years and

    will now be able to claim a new application and so start the clock again on their

    patent for 100% of their market and taxpayers will pay for this.

    We have had numerous examples of ridiculous restriction on the availability of drugs to

    people who need them such as opiates for pain in terminal cancer because they are

    addictive and cannabis for pain and nausea in terminal lung cancer because smoking can

    cause lung cancer.

    I am supportive of research and trials, I have been involved in 3 to date, as I

    understand that this, and my illness, is a learning opportunity for all concerned and

    necessary for the development of treatments. I do understand though that there are

    aspects of the system that range from out dated and ridiculous to the sort of thing

    that would normally be associated with organized crime. I think that the MS Advisory

    Council should be considering strategies to achieve a comprehensive review and reform

    of the aspects of the drug regulatory system that are shown to be unethical

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