Voices Across America

Michele Leans into her Rare Disease

michele rayes

michele

State: Texas
Congressional District: TX04

Diseases

Cancer, Endocrine Disease, Rare Disease

Issues and Challenges

michele has encountered: Access to Expert Providers, Access to Medicine, Copay Issues, Insurance Issues, Rare / Underserved Disease, Prior Authorization, Step-Therapy / Fail First

My Story

My story begins when I was 23, or technically when I was 22 because it took me approximately a year to get a diagnosis.

I had been sick and tired for so long but because I was so young no one took me seriously. After a year of being tested for everything from strep, mono and Guillain-Barre syndrome I walked in to an urgent care complaining of a sore throat that hadn’t gone away in ages. The doctor said to me...

Doctor: “How long have you had that lump”
Me: ”What lump?”
Doctor: “Go over to the paper towel dispenser and swallow”.

I had no idea, within days I had scans and biopsies and then I was told 'well if you had to choose a cancer you at least you chose “the good cancer”'. Except I don’t remember being given a choice, and as I would learn over the years, this cancer doesn’t just get cut out or radiated or whatever and go away. I would have to take meds for the rest of my life to control it.

And this is just the beginning of the story, I would experience a reoccurrence and then a rare disease as a side effect of the surgeries and radiation. Years of being dismissed, no transparency and worsening health.

But what led me to Patient’s Rising? Or advocacy in general? Well as my rare endocrine disorder hypoPARAthyroidism (which actually has nothing to do with the thyroid) got worse and began to cause other health issues I was determined to not let it control me or define me. I began seeking more knowledge and stumbled across a conference for my disease. At the conference it was not only refreshing to meet others like me but to meet doctors that understood and wanted to help. I decided I wanted to join the non-profit that ran the conference and find a way to pave the way to educate more physicians.

So after joining the non profit initially as a general board member and eventually moving up to the Vice Chair position I was determined to work with the medical advisory board to write pamphlets to help educate physicians about hypoPARA. I am happy to report I realized that dream and just a few short months after finishing the pamphlets I was able to attend the annual Endocrine society meeting and speak with hundreds of physicians and share the pamphlets with them. This led to some great conversations and inspired me to keep taking my message to the next level.

Next up starting a grass roots letter writing campaign to get more awareness for our disease so that we could potentially get a treatment. HypoPARAthyroidism is the last endocrine disorder without an actual treatment. Sure there are medications they give patients to put a band-aid on the symptoms but not an actual treatment. So I discovered voter’s voice and I reached out to the hypoPARA community to ask them to join me in writing letters to congress people. We received feedback from lots of senators and representatives. We even got meetings set up with some of them.

Next up communicating with the FDA and a letter to them asking for a listening session and later a PFDD.
Each step has been motivating me to do more, reach more people. I am happy to say we now have a potential treatment in the works that will hopefully to market by the end of 2023.

My fight won’t stop here though, because I know that when it does come to market we will have to fight insurance companies to pay for what will be a very expensive medication. We will most likely experience requests for prior authorizations and step therapy. With the help of the Legislative Advocacy Masterclass from Patient’s Rising, I am ready.

My Motivation and Inspiration

I want to help doctors understand why the current standard of care isn't sufficient for hypoPARA. I also want to help all patients with hypoPARA understand their disease better, give them the power and knowledge to advocate for themselves with their doctors and with insurance companies. If I can pave a better path for those who come after me, even 1 someone that would be incredible.

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