’m an active and healthy 25-year-old. People like me aren’t supposed to develop life-threatening diseases. But that’s what happened to me in March when I was diagnosed with severe aplastic anemia — a rare blood disease. Now that I’m on the other side of it, one of the many things I’m grateful for is that it struck this year, and not after Congress has eviscerated the Affordable Care Act.
Aplastic anemia develops as a result of damaged bone marrow. I had the symptoms — extreme fatigue, shortness of breath, pounding bilateral headaches, and a loss of vision — for days before I consulted a nurse practitioner. Following that, a quick blood test in my local emergency department revealed that I had dangerously low levels of red blood cells, white blood cells, and platelets. A biopsy confirmed that my bone marrow had stopped producing blood cells.
A dearth of white blood cells meant I had virtually no immune system. My body had no natural defenses against even the most routine pathogens we encounter in daily life — a cold could have killed me.
The good news was that a bone marrow transplant can treat the disease. My donor had to be an exact match. I was fortunate to find a willing and able donor — my father. After fighting off a serious bacterial meningitis infection and receiving dozens of blood transfusions, many rounds of chemotherapy, and prolonged regimens of immunosuppressive and anti-infective treatments, I finally received the transplant to replace my failed immune system with a new one. After more than three months of intensive in-hospital treatments, I returned home but continue to receive treatment to ensure the long-term success of my transplant.
Add up the cost of my care from that first visit to a nurse practitioner to today, and it easily exceeds $1 million. Medicines, long hospital stays, and numerous inpatient procedures accumulate quickly during catastrophic and unexpected health challenges. My survival would not have been possible without the high-quality health insurance coverage against catastrophic costs that I am fortunate to have through my employer.
The Better Care Reconciliation Act being debated in the Senate, like the American Health Care Act approved by the House of Representatives, will almost certainly restrict health coverage for people on Medicaid or those who personally buy health coverage through the insurance exchanges. But they could even leave people like me — with access to quality health insurance through my employer and, because I am under 26 years old, with extra coverage through access to my parents’ employer-based plan — out in the cold by weakening protections around catastrophic coverage requirements.
The Affordable Care Act, sometimes called Obamacare, codified a group of benefits that are fundamental to any health care plan. Called essential health benefits, these are categories of care that include inpatient and outpatient care, prescription medicines, emergency services, and the like. All of them must be covered by all individually purchased insurance plans. For these benefits, plans cannot limit patients’ annual and lifetime coverage and must cap their out-of-pocket spending. Essential benefits guard patients against the otherwise unmanageable costs of catastrophic health challenges.
But the House and Senate legislation severely weaken the ACA’s protections against the costs of catastrophic events. New provisions in these bills would let states apply for waivers — with virtually no restrictions — to bypass federally mandated commitments to spending caps. Such waivers would make it possible for states to put limitations on coverage. Furthermore, if a waiver is approved, a state could not be challenged if it decided to narrow the scope of essential health benefits to exclude important ones that contribute towards catastrophic illness coverage.
A recent analysis by the USC-Brookings Schaeffer Initiative for Innovation in Health Policy highlights that the potential for diminishing coverage is not just limited to individual plans in states that wish to modify the definitions of essential health benefits. Large employer plans, which provide most Americans with health insurance, are currently permitted to adopt and abide by the definitions of essential health benefits from any one state across the country. It would be permissible and entirely plausible for large employer plans to then eschew commitments to essential health benefits nationwide, imperiling patients who unexpectedly meet with significant health challenges.
The implications of congressional efforts to dramatically alter current health care law are not limited to the sick, the poor, and the elderly. Young and healthy Americans can be faced with unfortunate and sudden health challenges. I am grateful that my employer provided me with the kind of high-quality, comprehensive health insurance coverage that made it possible for me to access the urgent and intensive care I needed to fight my life-threatening disease. As Congress considers new legislation to reform the current health insurance system, our legislators should ensure that patients across America continue to have unencumbered access to essential health benefits.
Anirudh Srirangam is a health policy associate at APCO Worldwide, a public affairs firm in Washington D.C.