By Sabrina Corlette and Erin Reidy As the second anniversary of the Patient Protection and Affordable Care Act (ACA) approaches, we decided it was a good time to check in with the call center specialists at the American Cancer Society's Cancer information services to ask them how one aspect of the law the new Pre-existing Condition Insurance Programs (PCIPs) is impacting people with cancer. What we heard, in a word, is that it's been "amazing". The program is saving thousands of lives by providing a coverage option to people who were previously without options and hope because insurers could refuse to cover them simply because of their pre-existing condition. PCIPs were created in 2010 in all 50 states and the District of Columbia under the ACA to be a "bridge" to the sweeping insurance reforms in 2014, when insurers will no longer be able to deny coverage or charge someone more because of a pre-existing condition. Enrollment has grown steadily, with the latest figures showing approximately 45,000 people enrolled nationwide. The programs must accept people who have been rejected by commercial insurance companies, and can't charge a higher premium because of someone's pre-existing condition. The programs must cover a broad range of benefits, including primary and specialty care, hospital care, and prescription drugs. To qualify for coverage, applicants must have been without insurance coverage for 6 months and be U.S. citizens or legal residents. The PCIP program is a vast improvement over state options that pre-dated the ACA, which were often unaffordable and inadequate to meet the needs of cancer patients. PCIPs can fill an important gap for thousands of individuals and families. Since 2005, the American Cancer Society, in partnership with the Georgetown University Health Policy Institute, has sponsored and supported a unique initiative to help cancer patients navigate the private health insurance system. The Health Insurance Assistance Service (HIAS) is a service operated out of NCIC that is accessed by more than 7,000 cancer patients, survivors and their advocates each year. Callers with questions or problems regarding health insurance work with trained health insurance specialists who gather detailed information about the callers' needs and circumstances, diagnose the health insurance problem, and offer information about possible solutions. These stories also helped ACS CAN put a face on the health care challenges confronting thousands of cancer patients. When we wanted to learn about how the PCIP programs are impacting cancer patients, the HIAS specialists were able to give us the full scoop. Molly Foss, who's been working at HIAS for four years, told us that prior to the ACA, finding coverage options for cancer patients was a tremendous challenge. She noted that callers who had been previously without hope are "shocked" and "amazed" to learn that the PCIP option is available to them. "Before PCIP, we'd have to tell people there was nothing we could do for them", Molly reported. "Now we can actually help them". The HIAS specialists and callers also note the dramatic difference in premiums between the PCIP program and previous state options. In Texas, for example, the PCIP premium is roughly half the cost of the existing Texas program for high-risk individuals, even though the state imposes a pre-existing condition exclusion for a full 12-months. Through HIAS, we learned about people like Randy Morales, a small business owner from California. Randy and his wife Judy had dropped their individual health insurance policies a few years ago because of the cost. In the fall of 2010, Randy was diagnosed with invasive squamous cell cancer in his throat. Uninsured and uncertain of how to pay for treatment, Randy called HIAS looking for coverage options. The call specialists told him about the PCIP program in California, and he was able to enroll in time for coverage to take effect so he could have necessary surgery. After 35 radiation treatments and seven rounds of chemotherapy, in October 2011 Randy was told he is in remission. He estimates that his treatment cost more than $135,000, and there's no way he could have paid for that out of pocket. He continues to receive follow-up care every six months and finds the program to be very user-friendly. "When I was diagnosed, I was told it was stage 4d. Stage 4e is dead. And to come back from that diagnosis where I was told to get my life in order to where I'm sitting here in remission is a total 180 degree change in my mindset. PCIP was a life saver", Randy said. We also learned about Kathleen Watson, an owner of a medical transport service from Florida who was diagnosed in 2003 with leukocytosis, a condition characterized by an abnormally high white blood cell count. Kathleen, 48, previously had insurance through her husband's employer and exhausted COBRA after he became disabled. When she then tried to purchase coverage on her own, she was denied coverage because of her pre-existing condition. After 8 years of going without insurance and delaying treatment, in September 2011 Kathleen was able to enroll in Florida's PCIP. Since then, her coverage has gone smoothly. Kathleen has easily found physicians to provider her care and the billing statements are detailed and easily understood. Kathleen has been spreading the word to make sure more people know about PCIP. "Everything has been working very well. I've had no problem with PCIP. I'm finally getting the treatment that I've always needed. The only problem is that the program isn't publicized enough. There are a lot of people around here with cancer and once I tell them about it, the program just spreads like wildfire," Kathleen said. We're thrilled that people like Randy and Kathleen are able to benefit from such an important coverage option for those with pre-existing conditions. We look forward to 2014 when no one has to fear being denied insurance coverage because they have a life threatening condition like cancer.
[1] See 2012 rates for the Texas Health Insurance Pool at https://everytexan.org/images/HC_2012_12_PP_HealthExchanges.pdf.
Sabrina Corlette is a Research Professor and Project Director at the Center on Health Insurance Reforms at Georgetown's Health Policy Institute. There, she directs research on the regulation of private health insurance and markets, including implementation of the new insurance reforms under the Affordable Care Act.
Erin Reidy is an Associate Director of Policy at ACS CAN. She works on private insurance, Medicaid and ACA implementation issues. *Image retrieved from: http://bit.ly/z6BHo6
The true costs of cancer are heavy, they are deep, and they are ultimately unaffordable for many, a challenge further exacerbated by this year’s COVID-19 pandemic and spotlighted by the upcoming Supreme Court case challenging the Affordable Care Act.