Iva Rauh is a Pemphigus Vulgaris patient and advocate living in Maryland. Originally from Eastern Europe where the gene for this disease is prevalent, this is her plea to the rare disease community.
In 2006, I was diagnosed with pemphigus vulgaris, a rare autoimmune skin disorder. If left untreated, it could be fatal.
I was told for years that I had allergies. The dermatologist became my best friend. My GP was giving me injections with herbal supplements to boost my immune system. So when I got the diagnosis, I was in denial. Thankfully, my daughter is a PD, MD, OB/GYN, and breast cancer Researcher at the University Hospital in Erlangen, Germany. She had the right connections and I got an appointment to see Prof. Michael Hertl, MD at Uniklinik Marburg, Germany. It was there that the diagnosis was confirmed.
With a pre-existing thyroid problem, I could not get a health insurance. I was still covered in Germany, but German insurance does not pay US medical bills. I was a self-paying patient in the US. I also had to fly to Germany for a surgery, prednisone-induced cataracts, dental treatments, and so on. I was so happy when the Affordable Care Act was passed. I no longer had to fly to Europe to visit hospitals.
I have been on immunosuppressive meds for 10 years now. For six years, I took azathioprine and prednisone, then Cellcept but with no improvement. A month ago, Dr. Anhalt at Johns Hopkins Hospital recommended Rituximab. One infusion costs $17,000 and I will need four in the first year. I worry: How I will pay for them if ACA is repealed?
My life with a rare disease has not been easy. The disease puts a lot of stress on my family. I am not getting the support and sympathy needed from friends (it is just the skin!). I get tired of explaining the kind of disease I have, that it is not contagious, and so on.
The opportunity to be a patient advocate during Rare Disease Week on Capitol Hill was not just an honor, but a responsibility to remind Senators and Representatives that they have been elected to serve the people. The people of the US deserve to get the same healthcare of people in the other developed countries. I think the ACA should not be repealed, but it should be improved.
I think the NIH and the FDA need more funding. Many dedicated scientists, researchers and doctors are working long hours to find new drugs and treatments to save lives. Miracles do not happen. I believe the future of this country should be in science, not in building of walls.
Please start calling and writing your Representative. Make your sure voice is heard.
Lastly, I think medical and dental schools should prepare and encourage future doctors and dentists to treat patients with rare diseases. It took more than eight years to get an accurate diagnosis for me.