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  • Laura Robb

The Fundraising Why

Why do so many fundraise? Why does AIMS fundraise?

Not to be THAT person but I must answer this question with a question.

Why isn’t insurance covering HSCT?

When I was diagnosed in 2010, the sticker shock of the MS drugs blew my mind. After five days of IV steroids, I was given a disease modifying drug, also called a DMD. There are many DMD’s on the market. At the time I was diagnosed, all of them were injections or infusions. DMD’s were and still are prescribed in an effort to slow the progression of the disease. Back in 2010, I was told that the average DMD would provide 30% fewer relapses than not taking a DMD. So like most MS patients, I clung to the paltry 30% statistic and took the offered drugs, hoping to minimize progression and retain abilities.

My first DMD was Avonex, a once a week inject-able that I took every Friday night. My weekends were filled with fevers, aches, nausea and misery. Every.single.weekend. It was the one time in my life that I loved Mondays because by Monday, I was usually feeling better. After about six months, I was taken off Avonex due to liver issues and moved to Copaxone. On Copaxone, I was told to rotate the injections between my thighs, arms and abdomen. Each injection would leave a large welt that felt worse than wasp stings and would be hot to the touch for hours.

Any idea what what these two drugs had in common? They didn’t work and they were expensive. Like crazy expensive.

Fortunately, my insurance covered all but $50.00 of the monthly cost, but without insurance the monthly costs would have hovered around 6-8K per month. That is $72,000 – $96,000 annually for drugs that offered only 30% reduction in relapses.

Unfortunately, the 30% reduction in relapses never held true in my disease course. I continued to relapse and continued to worsen. My neurologists kept prescribing steroids in an effort to help my vision and retain my walking. The problem was, besides the 75 pound weight gain, I could no longer handle the steroids. The bone pain was crushing. It felt like sledgehammers being drilled into my bones so I refused any further steroids. This led my doctor to prescribe a drug called ACTHAR. The premise behind ACTHAR is that it would promote my body to produce its own natural steroid hormones and reduce relapses. One vial of ACTHAR cost $44,000.00 and I had two vials in my refrigerator. I used to joke that I had two brand new cars in my garage refrigerator.

My insurance company was paying (on average) $84,000.00 for a DMD drug plus the $88,000.00 ACTHAR. The annual cost of managing my MS was hovering around $172,000.00. Unbelievably, the insurance company never denied the DMD or ACTHAR, they never questioned the drugs and never once asked if the drugs were helping. I essentially had a blank check from the insurance company.

Which is why HSCT, a one-time treatment, is far more sensible for both the patient and the insurance company. According to the JAMA article, published in January 2019 by Dr. Richard Burt, 98.1% of patients experienced no evidence of disease activity after six months of HSCT and 78.5% still showed no evidence of disease activity after 5 years.. There are several places where a MS or other Auto-Immune patient can obtain HSCT. In the USA there are facilities in Seattle, Denver, Cincinnati and Chicago, with more becoming available. As mentioned in a prior blog, the Chicago facility is no longer doing HSCT, but when performed at Northwestern, the cash price was $125,000.00 for HSCT. The facilities in Mexico and Russia have much lower price tags which provide top-notch care for roughly half the price. Seems fairly reasonable, a one-time cost to stop a disease that affects 1,000,000 word wide. Any reasonable person could weigh the benefits of a one-time payment of $125,000.00 vs $172,000.00 annually, except many insurance companies had one word:

Denied.

I had Aetna insurance when I went to Northwestern for an evaluation. After being approved for HSCT, Northwestern submitted the approval request and surprisingly was approved quickly and I was on my way to treatment. Except it shouldn’t have happened. Months after returning from treatment, my case manager at Aetna called to see how I was doing. When I told her that I was fairing well, she dropped a huge bombshell. I had been approved by mistake. Everyone after me, was denied. Evidently, my insurance company held the belief that this was an experimental treatment for MS and not worthy of coverage. My HSCT procedure was approved by an interim manager thinking that this stem cell transplant was covered because it was covered for other diseases, such as cancer.

I had won the lottery without even knowing it. A $125,000.00 lottery win. But let’s look at the other side of the coin, the insurance company also won the lottery. They have saved $1,204,000.00 since my transplant. The savings is obviously considerable for one patient, but can you imagine the insurance company savings on 100 patients? 1,000 patients?

Unfortunately, insurance companies don’t weigh current medical treatment costs to future medical treatment costs which leaves countless MS and other Auto-Immune patients advocating and paying for their treatment on their own. But what if that patient doesn’t have savings to dip into, a retirement account to sell off or a rich uncle to call? For many, they are left to fund raise which is where the waters get very treacherous.

Just imagine finding out that there is a treatment to stop your disease, then imagine being denied coverage for that treatment. Now imagine being sick, and having to raise $125,000.00? Imagine having to raise that amount of money while not being able to hold down a job because your disease affects your ability to recall words, think properly or to stay awake for an extended period of time. For many that haven’t faced such a challenge, the thought isn’t imaginable because it isn’t reasonable. This treatment should be covered. For those left fundraising, they have one focus, to get better, but fundraising is a daunting and exhausting task.

And this is why I fundraise and tell you my story; to raise awareness for HSCT and to raise money for those who have the opportunity to get HSCT but have been denied either by insurance or are being forced to go out of the country. Someday I hope that the insurance companies realize that they are not being good financial stewards. Maybe the CEO’s of these insurance companies should take basic math courses or maybe they should review the trial data that have been completed with high success rates. If they did, they may be inclined to provide a cash allotment for patients to seek this treatment inside or outside the country. In the end, they are still saving money.

One key piece to the fundraising puzzle is the only HSCT charity that I am aware of, AIMS. This charity is run by many who have undergone HSCT. Their goal is to provide grants to patients undergoing HSCT in Russia and Mexico. My aim is to help AIMS continue to help others because for some, AIMS will provide the last fundraising dollars that they need , and that is my Fundraising Why.

As always, any donation is appreciated. There is no amount too small 🙂 Thank you! https://uk.virginmoneygiving.com/ShariMcGlynn

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