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Many people don't realize that transplantation is not a silver bullet for organ failure. Sustained follow-up treatments are essential to prevent the body from rejecting the foreign organ, and the costs to undergo this regimen are exorbitant.

Imagine that you have just undergone traumatic transplant surgery only to find that you can't access the medications required for your body to accept its new organ. Many patients across our state could find themselves in this predicament if Oregon lawmakers do not act swiftly to correct a misguided federal policy that is keeping vital health care out of reach for those who need it most.

After battling diabetes for many years, I took a turn for the worse six years ago when one of my kidneys failed. Now someone living with end-stage renal disease (ESRD), or advanced chronic kidney disease, I endured years of constant monitoring and testing — as well as costly dialysis treatments — just to stay alive.  

Fortunately, on July 16, 2015, I not only accomplished the near-impossible feat of making it to the top of the kidney donation list, but I survived the unsettling transplant procedure. Yet what should have been one of the best days of my life quickly took a dark turn.  

Instead of concentrating on regaining my health, I spent the hours after my surgery anguishing over the $4,500 I would have to pay for my seven-day post-op treatment — to say nothing of the fear that set in once I learned of the life-long costs of managing transplant surgery. 

Many people don't realize that transplantation is not a silver bullet for organ failure. Sustained follow-up treatments are essential to prevent the body from rejecting the foreign organ, and the costs to undergo this regimen are exorbitant. Even more challenging, this expense comes after years of financing pre-transplant care, on which many people — myself included — spend their entire life savings. 

As luck would have it, the county social worker who was assigned to Oregon Health & Science University quickly connected me to a charitable organization that helps patients with life-threatening illnesses cover the costs of critical treatments and services.

Many Oregonians battling rare, complex, and chronic health conditions rely on nonprofit patient assistance programs to bridge to the costly, yet indispensable, care that would otherwise be unattainable. These charities ensure that patients facing serious illnesses — and accompanying inflated insurance premium bills — can focus on managing their health, rather than bankruptcy. 

Yet instead of protecting this vital lifeline for our nation's most vulnerable patients, the federal government is allowing insurers to prohibit it. A policy issued by the U.S. Centers for Medicare and Medicaid Services (CMS) under the Affordable Care Act (ACA) is enabling health insurers across 41 states, including Oregon, to deny coverage to anyone who benefits from charitable premium assistance. 

Still, this misguided rule doesn't just risk lives — it eliminates a non-government payment source for health care. By relying on charitable donations rather than taxpayer dollars, these organizations help make it possible for many chronic — and often costly — patients to access the treatments and services they need without having to enroll in government-funded programs.

As one of many Americans whose life has been saved by charitable premium assistance, the importance of fixing this harmful policy cannot be overstated. 

I urge Oregon policymakers to pursue state and federal solutions to help ensure charitable premium assistance can continue to reach those most in-need. 

Larry Harvey is a retired government affairs professional who lives in Portland.

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