To Everyone in the US Affected by Rare Disease: Our Time Is Now

To Everyone in the US Affected by Rare Disease: Our Time Is Now
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Some will read this column and think it’s too political — that politics isn’t “in my lane” as a writer. I thought deeply about this prior to posting.

On a steamy, early July morning last summer, I got behind the wheel of my car next to my childhood best friend with a mountain of our favorite snacks in the back seat. That day, we drove west until farms turned into prairie, then mountains emerged. Fifteen hours later, we arrived in the city where my porphyria specialist practices.

Yes, he is a hematologist. And yes, I see a hematologist every few weeks in my hometown. But, as I tried to explain to my health insurance provider prior to making the appointment, it is important in the long-term management of my condition that I check in regularly with one of the few doctors in the country who are experts in porphyria.

My visit went well. Afterward, I reported to the infusion center to receive my treatment, as I would not have time to receive it in my own clinic back home that week. As I settled into my recliner and the nurse accessed my port, I couldn’t help but feel a small sense of dread accompanying my insecurities about health insurance coverage. As the saline began to drip, I turned my attention to my breath and faced the morning haze that started to lift over the mountains.

Since my diagnosis three years ago, I’ve made this annual pilgrimage to receive this doctor’s highly specialized care. It has been covered by insurance each time, and I was assured it would be again. Unfortunately, weeks later I received a telltale envelope from my health insurance provider. I picked it up out of the mailbox and felt it grow heavy in my hands. At the same time, my mind began spinning.

Trying to shake away my anxiety, I opened the explanation of benefits, mentally preparing for the amount I owed for my recent medical visit. I saw a specialist out of state and received an outpatient infusion of an expensive medication, but I was assured by a handful of medical and insurance representatives that everything would be covered. What I owed for this trip totaled nearly $25,000.

This sad tale of a surprise medical bill is all too familiar for many of us living in the United States. I have received several similar bills and fight them each time, but the consequential fear-induced stress, confusion, and hours of phone calls will ramp up my porphyria symptoms every time.

Surprise medical bills are a priority for the National Organization for Rare Disorders’ Rare Action Network and Rare Disease Legislative Advocates, and I’ve had the opportunity to speak to my state and federal legislators about this issue.

As my energy allows, I will continue to advocate for the healthcare my fellow zebras can and cannot access. I will promote rare disease awareness among local, state, and federal legislators, my community, and my healthcare team.

I talk to people in the rare disease community who cannot get coverage for their treatment or whose child’s health could have been dramatically improved from newborn screening. These issues are 100 percent political and are very much in my lane!

My well-being is tied to my healthcare. It’s tied to my insurance coverage for preventative, managed care and devices, access to specialists in any state, prescription medication coverage (especially for new and promising experimental treatments), genetic testing, mental health options with a counselor who works with your particular needs, surprise medical billing, coverage options for alternative treatments like chiropractic or acupuncture, and funding to rare disease organizations and research and development of new treatment types.

I am registered to vote. I live in Iowa and our polls open on October 5. I plan to vote in person and early.

Now, I’m talking to my friends and fellow zebras about doing the same. As people living with rare disease, we are so sensitive to health policy shifts and changes. Our vote can support the changes we want to see in our healthcare system, improve the lives of many, and lessen the anxiety of receiving that emergency room bill in the mail or testing out a new medication.

Voting registration deadlines vary from state to state. Early voting is happening across the country. For those who cannot make it in person, mail-in voting is an option. Even hospitalization is no barrier for exercising your right as a U.S. citizen.

Political talk aside, I’m not waking up on November 4 with regret that I didn’t use my vote to spur the change I wish to see in the world.

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Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to porphyria.

Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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Each morning, I make a choice to harness joy, despite navigating pain and day-to-day challenges of living with a rare disease, acute hepatic porphyria. A writer, creator and rare disease advocate, I believe in the power of speaking truth to generate hope and build connections that impact positive change.

I am the Iowa state ambassador for the National Organization for Rare Diseases’ Rare Action Network, serve on the Young Advisory Council of UnityPoint Health Des Moines, volunteer with the American Porphyria Foundation and am co-founder of This Porphyria Life, an online porphyria community for patients and those who love them. I have a Master’s in Public Health from the University of Iowa, and live in Des Moines with my fiance, Michael, and his two children.

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