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Was that a Dream?

How traveling to Mexico for a Hematopoietic Stem Cell Transplant Right Before a Pandemic Seems Like a Dream

By Tamara NetzelPublished 4 years ago 4 min read
Tamara Netzel wears the ventilator mask after getting HSCT in Mexico to treat her Multiple Sclerosis

I needed to start wearing a ventilator mask to protect my health just a couple months before the world realized a mask shortage or most people knew what N95 even meant.

My husband and I spent 28 days in an apartment in Monterrey, Mexico so that I could get a very promising autologous hematopoietic stem cell transplant to treat my Multiple Sclerosis in December 2019. The procedure is not accepted in the US by insurance despite the overwhelming evidence it is effective for MS and is the same treatment cancer patients nearly are given the red carpet in their quest for health in the US.

Because I have a different disease, if I wanted to have it done in the US, I would have to pay over $100,000 out of pocket or continue to take the standard DMT treatments costing the same for just a one year supply but my insurance would cover it. (Disease Modifying Treatment) Taking yet another DMT, after three different ones caused more damage to my body yet still allowed MS to get worse was not an option for me. One DMT, Gilenya sent my liver into failure, the next one, Ocrevus, caused damage to my 9th cranial nerve and wrecked my bladder function, and the last, Tecfidera allowed more lesions to grow in my brain affecting my cognition.

I tried to crack the mystery of why no health insurance would cover this treatment the research says is 85% effective in stopping progression of MS when the DMTs at most only slow it up to 60% effectively. I called the FDA, the MS Society, and countless other organizations for an answer. I’m told HSCT is FDA approved, but still not covered by insurance for MS. One of my phone calls was with my insurance company’s so called Transplant Team who misunderstood by only hearing me say I want HSCT but missed my saying it’s for MS. The woman on the phone proceeded to tell me it would be so easy and she was going to help me. I was relieved! Then at some point, she realized I don’t have cancer and took back all her promises including a free wig and cleaning service while I recover. Nope. My journey would be much harder, but the absurdity fueled me. So, I went to Mexico to get the stem cell transplant. There was no one who could tell me no at this point.

When I returned to the US in January, I felt amazing. I wore my beautiful mask I chose in my favorite color, purple, and the comfiest beanie I could find for my bald head. HSCT involves several rounds of chemotherapy, so yes, my hair fell out. Having no hair didn’t bother me at all. The chance to have this treatment outweighed any care of what people thought of my appearance. I overheard two guys trying to discreetly joke about my sitting near them with my mask because it made them think I have coronavirus and am putting them at risk. That was January. By April, the collective public conscience took situations like that to another level and people argued about everything imaginable related to masks. Because I didn’t have HSCT in the US, I didn’t have a doctor to ask, so I continued wearing it as that’s the last advice my doctors in Mexico advised me. The best I knew to do is think of myself as one of the most vulnerable to get sick with COVID19 and take the most strict safety measures I can to prevent it.

This constant vigilance took its toll on my mental health and I felt a depression I couldn’t control. I didn’t leave the house like most people, but the fear that this would have to be my existence much longer than the rest of the world had me thinking I hoped I didn’t make a mistake by getting HSCT.

I’ve now see it differently. I have no regrets. I look at this photo now as though going to Mexico for access to this treatment that my country has denied me as though it is a dream that never happened. But then I remind myself of how I fought to get it as soon as possible rather than wait and let MS get the better of me so that my country can complete ten years of clinical trials and maybe give MS patients access. My MS would have a ten year advantage before I’d be able to get this treatment. I’m proud I took that risk when I did, because now it’s behind me. HSCT treatments have resumed in Mexico after a few months, but I’m not sure I’d be as brave in this uncertain world to go now. It would likely be several years before I’d do it or maybe never. But I did do it. And I have hope for my life without my MS progressing.

I hope that this pandemic brings awareness that so many people are marginalized in our current healthcare system and our regulatory system for life saving treatment needs reform. It shouldn’t take 6-10 years for patients to get the latest, most effective treatments in the US when over 15 foreign countries offer it now.

I think there is hope the COVID19 pandemic may help our country realize we are not the best in healthcare sparking a change. I am only a patient, but I am committed to doing whatever I can to help this dream come true for MS patients.

I’m smiling in this photo, though you can’t tell. It’s the same smile I have now when I remember, “Oh that’s right, I did do this a few months ago and it’s not a dream.” My smile is for the hope of all MS patients who’d like to forget they ever had MS and our country emerging from these times better at caring about health.

This photo represents my normal before the pandemic; a normal the world adopted seeking health. We’ve had to take drastic measures to optimize our health together, so I hope we learn no one should be denied pursuit of health and happiness in America again.


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    Tamara NetzelWritten by Tamara Netzel

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