Isn't hard to trust someone when their future depends on how long you can remain sick?
How can you trust them?: Isn't hard to... - My MSAA Community
How can you trust them?
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1RiskyRich
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15 Replies
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I love Chris Rock... * Before you watch this, be prepared for foul language * As it can be offensive to some
Sorry, don't agree. It's not some conspiracy between drug cos. & neuros to keep cures hidden. HSCT certainly looks like it's got the potential to be most effective. Risks - benefits need examination.
No need to be sorry! Agree or not it's you opinion. How many years do you think it should be reviewed for? It's been studied since 1996. Unfortunately, it was performed on a cancer patient who also had MS. She is no longer with us due to cancer complications it her MS was not an issue or was not even treated afterwards. It's been done over 500,000 times since the 1970's. Just not for MS. I am not a gambler but I believe that 91% chance of stopping the disease is better than 50% of slowing it down.
I'm not sure what's needed to get insurance coverage since it's more of a procedure, not just a drug. I know they want some good evidence that it is acceptably safe and effective and it's pretty clear that this is the real thing. Want to avoid the CCSVI hype that didn't pan out.
I love my Neuro. Wish she was a General Practitioner so she could've been my Primary Care Doc. Anyway, she was talking about not being too "down" over the MS diagnosis since the stem cell research/treatment was sure to be approved soon, and she believes in it 100%. I guess she's got plenty of other regular Neurology patients and isn't concerned over losing her MS patients, lol. Now, it's up to Corporate America and Big Pharma (after all, they are the money that backs our country - besides China) to allow it to pass and be approved for mainstream treatment on MS patients in the US......Just my opinion, of course.....
True! It will get approved in 2022. I get very touchy on the subject because Biogen charged my insurance $19,607 every 28 days for my Tysabri infusion and the ONLY time Biogen ever called my back was to ask me why I stopped doing the med & was going for HSCT. 10 months no Tysabri, feel better than ever & Biogen is out of over $190,000 off just me alone in less than a year.
It's insane the gobs and gobs of money Big Pharma makes on the sick. Seriously, it IS insane! People don't believe in conspiracy theories but when billions of dollars at stake....money is an evil motivator and a very REAL motivator. It's fact, not conspiracy. And it's scary. I used to take the 'blue pill' until my husband opened my eyes. Look at all the farms that have been FORCED out of business, all the farms that have been FORCED into Monsanto's way of farming....THAT is very real. I'm from VT and can attest to the accuracy of that. I don't agree w/ ALL of it, but after a lot of research and just plain common sense......whew.......s.c.a.r.y. Unfortunately until I win the lottery, I am where I am. -_-
5 more years??? I can wait! That's a drop in the bucket in the big picture. Now I just have to hope insurance covers it!
oh sorry I honestly do not think it a conspiracy or such rubbish but we really are a cash cow.
I used to agree with that until I realized that not one person close to figuring the MS thing out is a Nuerologist or even backed by a pharmaceutical company. Makes me wonder Why? The underlying of MS are B & T Cells. They reside in the blood. That's a hematologist Feild of Expertise. A Nuerologist is all about nerves. When it gets there all that can be done to try to soothe the damage.
Cash cow, yes, conspiracy, no. Don't forget that we live in a capitalist society where everyone has the right to make a profit. I have plenty of friends who are on socialized medicine in other countries and while in some ways it's better, in many ways it's worse. Many surgical procedures have waiting times that are beyond the expected date of death from the disease. Regardless, even drug companies are entitled to make a profit, and being a market-driven economy, the US will never impose a ceiling on how much a corporation can make. So, because pharmaceutical companies can make profits here, they do the research and development here as they can pay the scientists needed to do the work, bear other overhead costs, etc. The other big expense is that US patients end up subsidizing the drugs sold to socialized medicine countries or developing nations, all of which cuts into the profits made here. So do I think that they are evil? Not at all. Do I think they're greedy? Maybe. But each and every manufacturer of any of the specialty or "orphan" drugs has a financial assistance for patients who cannot afford their products, which is just about everyone who needs them, especially those with diseases such as MS, lupus, sarcoidosis, ALS, etc. because these diseases are disabling. So patients enter into a vicious cycle: they become disabled, apply for disability (private and/or SSDI), and because many RX plans don't cover these specialty drugs, the disabled patient who has very little money coming in can't afford their lifesaving medications. Thus, the pharmaceutical programs' own financial assistance programs. Individuals who are on SSDI become Medicare-eligible 24 months after they are awarded SSDI. But since they are disabled and can't work, how are they supposed to afford their medication for those 24 mos., especially when the ACA exchange plans won't cover these drugs? The pharmaceutical companies' financial assistance programs. But once you become Medicare eligible, the ACA plan drops. People used to use their work insurance, converted to COBRA for 18 mos. and then to a HIPAA conversion policy, as their Medigap policies and those included RX. But with the advent of the ACA, many people lost their private policies and ACA exchange plans don't continue once a person is Medicare-eligible. Thus, they have to get a Medicare Part D plan or go without RX coverage, which is very difficult for a disabled with multiple conditions. And even if your Medicare Part D plan covers these specialty or orphan drugs, the patient is left with such an unaffordable co-pay or co-insurance that many have given up taking the drug. Why doesn't the pharmaceutical company step in with its patient assistance program in this situation? Because to do so would be to commit a felony under the Social Security Act's anti-kickback provision. So, the patient is in the position of having to find a charitable organization to help with the astronomical co-pay. To do that, you must satisfy the charity's income guidelines, which are based on household income, not just the patient's. And the charities won't tell you what those guidelines are! Further, not all charities cover all specialty drugs. And they are all underfunded, such that when they get funded the demand is so great that they are very limited in the number of patients they can take and usually run out of funding within the first week. And so, you will see on this site posts from people who have had to choose between paying for their medications or supporting their families or themselves. This is a complete disgrace when an American citizen is prohibited by federal law from receiving his or her lifesaving medication! This is especially true when the drug companies' have patient assistance programs available and are more than willing to provide it! I know that to many of you this sounds like a broken record, but for those of you who have not read prior posts on this subject, I am directing your attention to a petition I started on change.org to fix this problem and amend the law to allow those of us on Part D to receive help from the drug companies to pay for these specialty drugs. Just click on the link below to sign, and thanks for your support!
If you cannot click the link, just copy and paste into your browser and it will take you straight to the petition. Again, thanks for your support. The life you save just may be your own or your loved ones.'
I like the Life You Save May Be Your Own. I liked that song. According to Disabillity I am fine to work. MS is no longer a disability in their eyes. Yet when I applied I supplied 3 doctors note that to them meant nothing. I appealed & maybe November or December I'll get my court date. Since I take full responsibility of me, I held fundraisers after fundraisers so I can go get HSCT done. Reached my goal & had it done in May. These pharmaceutical companies you talk about REFUSE to allow HSCT to pass approval by sending their Lobbyists to fight against it. It will be approved in 2022 and those lines to receive treatment will be longer than the unemployment lines. Would you not agree that 91% of stopping the progression is better than the 50% chance of slowing it down they are offering? If your fighting to stay on their medicine, that's one fight I can't back-up.
Hell no, RiskyRich, I would much prefer NOT to stay on their medicine, but until there is an approved and safe alternative that either Medicare will cover or that I can afford our-of-pocket, I (and everyone else with MS and other monster diseases who must rely on govt.-assisted RX plans) need to have the medicine, wouldn't you agree? Changing the law is the only way to do that, and that's all the petition is about.
About your HSCT--what insurance do you have that is allowing the procedure, since I know it costs a fortune. I would love to hear from you what convinced you to have it, because it is a long, drawn-out process if done correctly. That industry has spawned so many charlatans that advertise that they do stem cell transfer and they take fat cells from your butt and reinject them elsewhere, which is as good as putting on a Superman costume and figuring that since you now have super powers the MS will just go away by itself. A few years ago I began researching possible HSCT as a cure, and I found some really excellent centers, one in particular near Tel Aviv, Israel that were doing it, but it was still considered experimental then. The procedure, LOS in the hospital, and the quarantine period kind of scared me. Is it the same now as it was then? I would love not to have this disease any more and not have to be on these drugs!
Head to head test. With & without pharmaceutical drugs.
P.S., RiskyRich. I am the only person I know who got SSDI on the first try. It all depends whose desk it lands on. My husband had to take 2 appeals after he had a disabling stroke that cost him the use of his left upper extremity and his lower extremity damaged and barely useable. Get yourself a lawyer who specializes in dealing with SSA on this issue; most of them are former administrative law judges for SSA or know the ALJs in your area. You generally have to pay only if you prevail, and then they usually take their fees from the back moneys that SSA owes you. I was a labor and employment lawyer when my husband suffered his stroke before I was diagnosed with MS, and that's what we had to do. Good luck!C
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