Never Stop Being Your Best Advocate With PH

Jen Cueva avatar

by Jen Cueva |

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Patient advocacy is a broad term covering many topics, and the concept leaves many confused. Those of us in the pulmonary hypertension (PH) community must educate ourselves about it.

In this column, I primarily refer to self-advocacy and briefly touch on systems advocacy. To me, self-advocacy means making my needs known and my voice heard. I self-advocate in my social circles, when I interact with strangers in public, or when I talk to my medical team.

After an ongoing battle with new healthcare and pharmacy insurance providers over coverage denials, I had to speak louder to meet my needs. I researched avenues I could explore and enlisted the help of patient advocacy groups.

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My insurance providers changed when we moved across the country and my husband, Manny, switched jobs. The new providers denied my medication because it was a brand name, Revatio, versus the generic sildenafil. My PH team appealed the decision because I had been taking the brand-name medication for over 10 years, and they felt it was needed. I asked if I could try the generic version so that the insurance company would hopefully push the request through and I would finally receive my medication.

Three weeks later, the insurance company denied the request for the generic version, saying the dosage was too high.

Maybe you’ve also experienced this insanity. I found myself thinking, “Who is the doctor here?” How could the insurance company refuse to pay for a medication that my medical team has ordered? It was frustrating and left me beyond exhausted and in tears on some days.

The additional stress exacerbated some of my PH symptoms, including increased palpitations, chest tightness, and anxiety. My gout flares from chronic kidney disease were also more prominent.

Finally, after a monthlong struggle, my efforts paid off and my medication arrived. I got my hair trimmed and held that package with the medication tightly. It was a cause for celebration at my house. Hopefully, no one has to undergo such challenges to obtain PH or other treatments.

This battle infuriated me — not just for myself, but for those who can’t continue to fight and may go without their treatment when facing such dilemmas. Unfortunately, this is not uncommon for those in rare disease communities.

Since my diagnosis, I have continued to work to increase awareness and advocacy for the PH community in big and small ways. For example, I’ve contacted my local members of Congress to share my PH story to persuade them to support a specific health-related bill. I also advocate for myself and my community by speaking up about systemic healthcare issues.

Self-advocacy, although it can be confusing, is something we all do if we live with rare or chronic diseases. Some may find it intimidating to speak up for themselves to doctors or lawmakers or even argue with insurance companies, although advocacy is simple. It’s often achievable over the phone or via email. Most members of Congress have several offices that do in-person or virtual visits. Other nonprofits do most of their work on the phone, although some offer office visits.

Learning to continue to be our own best advocate is an ongoing process. It’s simple to locate any new healthcare-related bill headed to Congress and contact your state representatives. Or you can easily use this link to search “healthcare” or whatever topic interests you. You can also filter by your state or other criteria.

Fellow Pulmonary Hypertension News columnist Mike Naple lives and works in the heart of it all and continues to promote advocacy like a champion. He shares a perfect example of how he’s advocating for systemic changes in a recent column.

Together, we can work to bridge the gap and educate others about our lives with PH. Never stop being your best advocate.

Note: Pulmonary Hypertension 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 Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.


Claire Richmond avatar

Claire Richmond

"Who is the doctor here?" I've thought that very thing about an insurance denial! Thanks for the awareness you're creating about this issue both through your writing and through your conversations with legislators. This is a huge problem in healthcare, the rare disease community in particular, and your efforts will benefit us all. Thanks for the encouragement to share!

Jen Cueva avatar

Jen Cueva

Thanks for reading, Claire. We are and always will be our best advocates. The doctors are our quarterbacks, perse, right? We work together to encourage and educate each other as we navigate life with a rare disease. We must keep PHIghting for our care and educating the healthcare communities, too.

Take care, and thanks for such thoughtful comments.


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A Conversation With Rare Disease Advocates