ACCESS TO EXPENSIVE MS TREATMENTS

[Sukie427]

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??

[Georgeinwv]

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

[Sukie427 in reply to Georgeinwv]

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.

[Georgeinwv in reply to Sukie427]

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

[Sukie427 in reply to Georgeinwv]

What a disgrace that in this country people have to choose to live without their lifesaving medications just to be able to survive! These are not "entitlements," people! These are benefits we paid for every day of our working lives! In one week we all go to the polls to elect only a new president, but members of the House and Senate! Before you vote, call their offices and deluge them with this problem!!! TELL THEM THAT THEY NEED TO AMEND THE SOCIAL SECURITY ACT TO ALLOW PATIENTS GET DIRECT FINANCIAL ASSISTANCE FOR THESE DRUGS DIRECTLY FROM THE MANUFACTURER!

[swb83 in reply to Sukie427]

Can you just type the link in and it will highlight so you just have to tap on it to be connected?

[Sukie427 in reply to swb83]

Yes, but it'll have to be tomorrow since I am on my cell phone right now. If you would like to surf, the actual link should be all over prior posts on this subject, but I will post it tomorrow. Please help support it by forwarding it on to all your Social media friends and contacts ! Thank you for your support. Every signature is an investment in our lives!

[KKlynch5096]

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.

[Sukie427 in reply to KKlynch5096]

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.

[normwithms]

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.

[Sukie427 in reply to normwithms]

How are you doing, Normwithms? You can't teach yourself not to have a disease that requires medication--you need to call your Congressional representatives and senators and get them off their butts to take care of this problem! This is not a country where people should be forced to choose between saving their lives with the necessary medication and surviving! This country should be ashamed.

[normwithms in reply to Sukie427]

Hello Sukie427, I am doing just fine. I agree with you, it is a shame we live in such a backwards country. I am fortunate that the Senator I am voting for (Patty Murray) understands MS. She watched as her father past away because of it. She keeps pushing to get things done. I have done what I can to put the plight of people with all kinds of problems in front of the people I support. I still can work a little, so I can make it for now but MS has a Genetic component. We need to get this fixed for my kids and all the kids to come as well as the people who need help now. So I and my family will be voting. After the election, I will still be a pain in the ass to all who don't think they need to do there jobs.

[Sukie427 in reply to normwithms]

Great! Glad to hear it! Did you sign the petition on change.org?

[nes78]

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.

[Sukie427 in reply to nes78]

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.

[Staceylegal]

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.

[Hidden in reply to Staceylegal]

Hi there!

Too many of us legals here, is that a coincidence? Lol

My name is Giovannia, from MA., just joined, hoping to find others to discuss negative drug symptoms with. Also to find some friends. MS is a difficult subject to explain to co-workers, as most of the time they look at you like your contagious. All of a sudden the people you were friends with for years stop asking you for coffee or to go out to dance. When they see the cane, which I do not use often, for fear of answering why i have it, their attitude changes.

I remember the first time I fell in front of a judge because my leg gave out. I remember how I couldn't quote a statute cause I couldn't remember it. And i really remember when my words were slurry and I couldn't see out of one eye.

I have now retired, Do I want to be? NO.

Thanks for letting me vent. G

[Jesmcd2 CommunityAmbassador in reply to Hidden]

Hi Hidden welcome to our chat of MS. And of pretty much everything and anything else. This is a pretty safe place to ask questions, get info or put on a path of were to find it, and a place to vent

I was only dx'ed Mar '15 so lm still new to this roller coaster ride. There is so much to learn from it. The hardest was losing friends and some family members. MS is hard to explain since there are so many symptoms and they are different for everyone. Although they try to understand.

I'm so sorry that happened to you in front of the judge like that, it must have been rough. I hope someday you will be able to laugh at that. Cause without humor we're gonna lose it

Welcome again.

[Hidden in reply to Jesmcd2]

Nice to meet you! You know what? I did laugh at the judge incident, and have many times since. You really have to be able to if at all possible to laugh at any small thing however horribly ridiculous it could be.

[Sukie427 in reply to Hidden]

Hi, Twistedstitches. Since everyone hates lawyers, do you think people think this is karma that we ended up like this? I also have gotten negative reactions from certain colleagues but nothing like the experience you seem to have had. Pretty much everyone was sympathetic except one opposing counsel who tried to use it to distract me during the litigation. My last official act as a lawyer was to get her summary judgment against me reversed. The case went back for trial 3 yrs later and 2 other lawyers tried it and lost, but I went out a winner !

[Hidden in reply to Sukie427]

Love that!

"Karma is only justice without the satisfaction

My parting words to a judge once after being called a very nasty word by an opposing counsel was..."Your honor, I believe he should be neutered " ha ha ha.

Miss those days, although I think it's important to have Drs that make you laugh and are easy to talk to. I've had some real jerks along this journey, and in the beginning I used to just accept their behavior. Not anymore!

I believe I have lost my inner filter, a privilege of getting older,to say whatever I want. Lol

[Sukie427 in reply to Hidden]

You are correct---I say whatever I want and then blame it on my age and the MS!

[Sukie427 in reply to Staceylegal]

Don't qualify for that either because I was responsible and purchased a private disability policy. So while my income (household) has decreased to a mere fraction of what it was, it is still to "high" to get further assistance. So nice to be dependent on our government benefits which we paid for when we are on medications that only Hillary Clinton and Donald Trump could afford!

[shortyPPMS]

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

[Sukie427]

OMG! What a nightmare! I'm waiting until the election is over to see what the US comes out with. I don't mind telling you that I am very scared.