Obamacare Has Made Life with MS a Living Hell

February 25, 2014

As the story appears at The Right Scoop, Pat Carfagno:

Multiple Sclerosis is a disease of unknown cause that slowly takes away a persons abilities to think, to move, to care for oneself. There is often a considerable amount of pain involved. Multiple Sclerosis does not kill. The person does not die from the disease itself but from its secondary effects.

The life span of the person with MS is not markedly changed. That is the cruelest part. As helpless as we can become, we will go on living with whatever pain and disabilities we have, almost as long as a healthy person would live.

Receiving a devastating diagnosis is often accompanied by the encouragement that science is coming up with new treatments every day. Multiple Sclerosis is evidence that this encouragement has basis in fact. In the last 15 years, new drugs with the power to slow the advance of the disease and often improve the quality of life of the people treated for MS have been developed with new powers never available before.

Since my diagnosis early in 2002, many new treatments have been developed. Avonex and Tysabri are just two that I have used. Tysabri was a real game changer for me. Tysabri is given once a month IV.

Most of the old school drugs promised to decrease the frequency of flare ups of disease, but did nothing to improve disability. Tysabri gave me new life for 5 years. Although I was still effected by the disease, Tysabri improved my quality of life! It lifted what is known as brain fog, improved my endurance and lessened the crushing fatigue that is MS. I went from frequent use of a walker, to the use of a cane. For me, it was miraculous. As frequently happens with Tysabri though, I developed some antibodies that made treatment with Tysabri no longer advisable, after years of positive results.

In 2013, Tysabri was discontinued as my treatment. There were some new drugs with great promise. The first I tried had some very disturbing and painful side effects. When that new drug was discontinued, my physician recommended that I begin taking a new pill, Drug X. The paperwork was submitted in the second week in November.

A consultation with the private drug coverage website told me I was covered for the cost of the drug minus my co-pay. I contacted my drug insurance companies eight hundred number to verify and I was told that my coverage had changed because of Obamacare. My private insurance, a benefit gained as compensation during my working years, would now only cover this drug so minimally as to be useless. In order to be treated, I must come up with approximately 50 grand a year, cash, out of pocket.

It might as well be a million.

I revisited the drug benefit website. It still told me that I was indeed covered as it had said before my insurance got involved, for the cost of the drug minus my co-pay! There may also be a deductible of about 3 grand. I called both the drug insurance and the drug company and told them that I had determined that I was covered and sent them screen shots of the on-line determination of benefits.

At the time of this writing, I have since received my first dose with observation of Drug X and suffered no detectable side effects. I am feeling much better. I’m still not sure how much this first dose will cost though and thus I do not have a full prescription filled. I’m waiting for the bill to see who is actually correct. The charge could be one hundred dollars or thousands. I still don’t know. If it is thousands, I will simply not purchase it. I will remain untreated and I will be left to the consequences of the disease. I will not bankrupt my family for the “greater good” that Obamacare alleges. I am sadly quite confident that others will be forced to make the same choice.

In a few days, it will have been longer than 3 months since the script was originally written by the doctor.

The take away from all of this is not that “poor me” has or doesn’t have access to medication. The fact is that the Obamacare formulary covers NO drugs for the treatment of Multiple Sclerosis. Consequently, people will be denied coverage, not on the basis of their condition, but based on the price of the only existing treatments. Inclusion in the Obamacare formulary is based on per patient per drug per annum. Multiple Sclerosis? Sorry. Lupus? Any life long disease with only non-generic treatments? Sorry, no help for you.

People with MS and other neurological diseases will likely stay alive in spite of the denial of treatment, but they and their families will be burdened with their horrific quality of life. So as untreated patients can anticipate a future that includes visions of them some day lying in their own waste, they can be assured that their colonoscopy will be free.

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