A month ago, I was diagnosed with MS, otherwise known as Multiple Sclerosis, a disease that effects 913,925 Americans, and around 2.8 million people worldwide. Instead of treating my case with some sense of urgency, like we do for victims of other neurological issues like stroke victims, I was put on IV injections of methylprednisolone for a week and sent home. To date, I haven't met with a neurologist, which was somewhat astounding to me. And while the symptoms haven’t gotten worse, they haven’t improved much, either.

My primary symptom is visual impairment, effecting my balance, ability to see straight, and overall has placed me into a deep state of depression, the likes of which I have never known.

After self-educating myself about disease modifying therapies, I found that the recommended treatments were designed to treat the symptoms and prevent disease progression. I learned about their costs, some costing as much as $60,000 annually, not for a cure, but for drugs that are classified as immunosuppressants. 

Even as a mildly successful business entrepreneur, there’s no way I can afford that. I'm particularly business-savvy, so maybe I could make it happen. But I couldn't help but think of the hundreds of thousands of my fellow Americans that couldn't afford this kind of medical burden being placed on them. 

That's when I learned about AHSCT therapy, and read this success story: https://futurism.com/reversal-of-multiple-sclerosis-via-risky-stem-cell-treatment-confirmed

 

 

Recent studies of the American healthcare system demonstrate greed and profiteering driving pharmaceutical companies to find these disease modifying drugs, while staunchly failing the American taxpayer, who pays for research grants, in so many ways. One such way is in allowing patent holders to block their competitors from releasing less-costly lifesaving drugs: https://www.supplychainbrain.com/articles/36649-how-a-drug-company-made-114-billion-by-gaming-the-us-patent-system.

Another way Medicaid is failing Americans is by allowing the complete prohibitions on therapies that potentially work, limiting access to them, despite the fact that they're cheaper for insurance companies and offer a potential one-time approach. But it your livelihood is taken by multiple sclerosis, as it is in most patients, how long until you're no longer able to work and afford healthcare, presenting another issue. 

As a 25-year-old, I’m about to surpass the age of 26, making me ineligible to receive private insurance from my parents. The health insurance company has already refused to pay for several of my appointments. And I’m expected to believe that they’d pick up the bill for $60,000 for my Ocrevus?

 

 

 

Research indicates that AHSCT therapy is often highly successful, yet no one will use the word, "cure", because it always, "Needs more study", or because it, "is advertised by scammers in other countries". In one patient in Canada, it has removed all signs of multiple sclerosis for the past 13 years. Experts in the United Kingdom have just started publishing about the treatment’s effectiveness (https://www.genengnews.com/topics/translational-medicine/stem-cells-may-move-to-the-front-line-against-multiple-sclerosis/)

Care to know how much Medicaid spends every year per individual multiple sclerosis patient? Who, by the way, are much more reliant on Medicaid than other receivers of health assistance, in addition to requiring 3 times the doctors visits?

A recent study estimated that it costs a total of $25.9 billion per year. (https://www.ajmc.com/view/cost-effectiveness-multiple-sclerosis-economic-burden) Multiple Sclerosis is a, "steady investment" for those looking to invest in research and development into new disease modifying therapies. (https://www.marketwatch.com/press-release/multiple-sclerosis-drugs-market-analysis-key-segments-share-size-growth-status-and-forecast-2028-2023-03-03)

I would argue that, while it's still experimental, a possible cure has already been found. The problem is, insurance companies would rather pay for us to receive drugs like immunosuppressants, which are inherently costly and need to be revisited every six months to one year, instead of looking for cures.

With trials available in the UK (https://www.sth.nhs.uk/autologous-haematopoietic-stem-cell-transplantation-for-multiple-sclerosis/), a whole clinics being opened in Norway, which opened the first clinic in the nation to offer it as an option (https://pubmed.ncbi.nlm.nih.gov/24554104/), I’m again astounded that this isn’t presented as an option for myself or others suffering oftentimes debilitating symptoms of multiple sclerosis.

For me, personally, I fit all the health-related criteria (for now) to get AHSCT therapy done. The criteria is:

·         Are younger than 50 years old

·         Have a shorter disease duration (i.e., less than 10 years).

Other criteria I do not meet, such as, “Not having Disease Modifying Drugs work” or “severe EDSS score” (A score used to measure your level of disability), are not things that I wish to experience. Research also suggests that AHSCT is more effective in patients who’ve had MS for less time. So why, then, isn’t it an option for people like me?

We need to open the pathway for private individuals to decide what their treatment options are. Considering my insurance company will likely end up paying for my disease modifying therapy drug, why not pay for the therapy that could prevent damage from ever occurring, like AHSCT? It’s actually, oftentimes, cheaper. And is already in use to treat certain cancers, like leukemia. Also, AHSCT harvests STEM cells from my own body, eliminating the potentially unethical procurement of STEM cells elsewhere.

Sign this petition to tell legislatures that we need to change insurance company policies and allow patients to decide what treatment is best for them. Let people like me decide for ourselves, before our neurological systems are permanently damaged and any possibility to work and provide for ourselves is gone.