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Let Your Voice Be Heard

March 6, 2017 By Dr. Jeremy Feldman

Pulmonary Hypertension Patients Take Note!

healthcare costs for PAH patientsThe pulmonary hypertension community should raise their voices and make noise.  We stand at the brink of a dangerous time.  The federal government is seeking to change the health care system that has allowed the greatest advances in the care of PAH in the last 50 years. We are not advocating for any particular political party or even for a specific law. But we do want to point out some of the key issues that can directly impact our PAH patients. Why should this matter to you?

Pre-existing Conditions

Without a guarantee that pre-existing conditions won’t limit your ability to obtain high quality health insurance all PAH patients are vulnerable.  Imagine a situation where you have to change health insurance plans but you are not eligible for coverage for a year due to your PAH.  How will you survive that year?  Who will pay for your medications and doctor’s visits?

Lifetime Coverage Limits

Why does it matter whether your insurance coverage has a lifetime coverage limit?  Imagine a 25 year old mother of two young children who is diagnosed with severe PAH.  She is started on aggressive treatment for her severe PAH.  The annual cost of the medications alone is $250,000 per year.  Add an additional $25-50,000 per year for testing, hospitalizations and doctor visits.  If lifetime coverage limits are brought back, this young woman is likely to run into her coverage limit before her children have graduated from high school.   Who will continue to pay for her medicines or her lung transplantation once she reaches her lifetime coverage limit?  Who will explain to her children that the insurance company is unwilling to pay for their mother’s life-sustaining healthcare?

Coverage For Young Adults On Their Parents’ Plan

How will we explain to the 20 year old who was just diagnosed with PAH that he is not eligible for coverage under his parent’s health plan?  He is too ill to work and has moved back with his parents.  Who will pay for his medications or his care?

Expanded Medicaid

At a national level the health of millions of Americans is dangling in the balance.  At a local level hundreds of my patients have had health insurance over the past 7 years thanks to the Medicaid expansion.  Before the expansion of Medicaid millions of Americans sought care in the emergency department where they received episodic fragmented care.  Hundreds of my patients were without the coordination of a PAH program and without the benefits of the complex medications that fortunately are now available.  They limped from one hospital stay to the next, short of breath and loaded down with extra fluid.  For the past 7 years they have enjoyed the benefits of a health system that focused on keeping them away from the emergency department and out of the hospital.  Do we want to return to that time when patients making minimum wage were not eligible for state-supported health insurance?

We all pay for the care of uninsured patients.  We pay for it in higher health care charges and a less efficient healthcare system.  The threat of withdrawing support for expanded Medicaid coverage for our poor could negatively impact many PAH patients.

Speak Up!

Call your elected officials, email them, sign petitions and show up for town hall meetings.  Make noise!  Healthcare advocacy does not have a party affiliation.  Use your voice to help bring attention to these issues that directly impact PAH patients and many others.   

Filed Under: Healthcare Costs

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