The Affordable Care Act (ACA) was created by the government to provide patients access to affordable medicines and services they need, “especially for the sickest among us,”1 but from what I have uncovered, at least in cancer care, this may not be the case.
Before the ACA, the US Department of Health & Human Services, the Centers for Medicare & Medicaid Services, and other federal agencies gathered data from many healthcare market resources and experts; they focused on what was not working well in our current system. The goal was to improve the care and quality of services for all Americans and create a better system that will:
- Make healthcare affordable
- Assist with premium payments based on income
- Not deny care for preexisting conditions
- Have no lifetime maximum
- Expand services to all Americans who do not currently have healthcare.
High Cost Burden on Patients
I searched the Internet for articles regarding the ACA and all stakeholders. I looked for insight from thought leaders in managed care, employers, physician practices, patient foundations and support groups, and patients and their families, by interviewing medical directors, healthcare providers, cancer support foundation leaders, practice managers, and patients.
A 2014 report from the Pharmaceutical Research and Manufacturers of America (PhRMA) claims that a significant out-of-pocket burden is being placed on patients with serious illnesses by the majority of health plans participating in the exchanges created by the ACA.1 This, in part, is a result of requiring particularly high cost-sharing for all medicines (in at least 1 category) for specific conditions. This cost burden limits patients’ access to needed medicines and leaves many patients with nowhere to turn, which can negatively affect their health outcomes and even their lives.1
In the same study, data revealed that in 7 of 19 classes of therapies for serious illnesses, such as cancer, HIV/AIDS, autoimmune diseases, and bipolar disorder, more than 20% of Silver health plans require coinsurance of ≥40% for all drugs in those classes.1 Similarly, in 10 of the 19 selected drug classes, ≥20% of Silver plans require coinsurance of ≥30% for those drugs.1
Furthermore, more than 60% of Silver plans place all covered medications in their formulary in the highest tier, including drugs for multiple sclerosis, rheumatoid arthritis, Crohn’s disease, and certain types of cancer.1 Responding to these findings, Carl Schmid, Deputy Executive Director, The AIDS Institute, said, “We want the Affordable Care Act (ACA) to work, including for people living with HIV/AIDS,” but “shifting the cost of medications to patients, by some plans, is not only blatant discrimination, but it can lead to poorer health outcomes since beneficiaries will not be able to afford and access their life-saving medications.”1
John J. Castellani, President and Chief Executive Officer of PhRMA, also commented on the findings, saying, “The Exchanges were meant to provide patients access to the medicines they need, especially for the sickest among us. Yet this report paints a very different picture, one in which many Americans still find themselves unable to access the care they desperately need due to high out of pocket costs.”1
Virginia T. Ladd, RT, President and Executive Director, American Autoimmune Related Diseases Association, noted that “putting treatments out of reach of autoimmune patients with life-changing and life-threatening diseases makes no sense.” Ms Ladd added, “This approach not only results in poorer outcomes, but eventually causes a significantly higher price tag for medical costs due to preventable disability and the loss of quality of life for the patients.”1
Community Cancer Centers
Patients and their families are under incredible stress when diagnosed with cancer (or other serious illnesses), and the added burden of increased medical cost, on top of insurance cost, can bring them to their knees. When interviewing patients, as well as practice managers and their staff who deal with patients and their families daily, the common themes of concern involved costs, copays, coinsurance, and “How do I pay for this and not burden my family?”
I spoke with Anne Slam, Practice Manager at the Eastern Connecticut Hematology & Oncology Associates practice, which has approximately 50 employees (5 physicians and 3 advance practice registered nurses) and sees approximately 150 to 200 patients daily. Ms Slam joined the practice in 1990 and has been the administrator for approximately 20 years. She is also involved with our Connecticut Oncology Association, and is a member of the Community Oncology Alliance Administrators’ Network. Through the years, she has served on many committees and has been a reimbursement consultant, speaking throughout Connecticut.
Ms Slam discovered that many of the patients in her cancer practice have no idea what type of health plan they selected through the exchanges, and are therefore overwhelmed when they discuss with social workers or financial advisors their treatment costs and the details of their plan coverage. In addition, they have to deal with the out-of-pocket expenses and copays.
Ms Slam noted that because of the uncertainty surrounding coverage under the ACA, the practice staff has to call each plan to understand what services are covered for each individual patient before the patient begins treatment. This back and forth is time-consuming and has caused her practice to hire more staff, just to be able to provide this service. In addition, many plans do not get back to them in a timely manner, which could delay treatment for the patient, which is a huge area of concern according to Ms Slam. She assured me that her practice was not delaying treatment for patients, and that their oncologists will not change the way they practice because of these changes introduced by the ACA. Rather, they will move forward in good faith so that patients can obtain their lifesaving chemotherapy without delay.
Quality of Cancer Care
My concern is that not all providers will emulate Ms Slam’s practice, and if that happens, the quality of care for patients with cancer will rapidly deteriorate. The time between diagnosis and treatment is crucial in the fight against cancer, and any delay can reduce the patient’s chances for remission and possible cure. To better understand the patient experience under the ACA, I interviewed patients and spoke with 2 of the leading cancer support foundations that work with patients with cancer locally, regionally, and nationally—the Cancer Support Community and CancerCare.
After speaking with several patients with cancer, I was disappointed to hear that they were dealing with increased costs of copayments and coinsurance, and were denied access to some of the top oncology centers in the country, many of which do not participate in the ACA.
In addition, patients who completed treatment and their disease was in remission were not always given survivorship care and guidance; that is, the majority of patients with cancer who complete treatment want to get back to their normal lives but are not provided with the tools to do so, including information about exercise, nutrition, and a follow-up schedule.
One patient in particular completed a physically debilitating treatment and did not know where to go or what to do to feel whole again, and “not like a cancer patient.” With no guidance from her doctor or covered benefits from her health plan, she explored physical therapy, for which she paid out of pocket. In only a few short weeks of physical therapy, and with the encouragement of her therapist, she was on her way back to work, and her “precancer life.” Survivorship care needs to be part of the value-based care championed by the ACA.
The high cost of treatment is clearly a concern for patients with cancer. One patient reported not having follow-up scans and appointments, because of an inability to pay the copays; another patient reported taking medication every other day instead of daily because of the cost. Yet another patient with breast cancer stated that her monthly cost for radiation therapy was $27,000. Many patients asked, “How can I focus on healing and getting better when I have so many bills, debt, and am afraid I cannot afford what could possibly save me?”
In my discussions with medical directors, they echoed much of what I had heard from others and added other thoughts. The quality of care was their utmost concern, and they are hoping that delays in care and patient choice for the type of treatment do not take a wrong turn.
Patient Support Organizations
In my quest to better understand how the ACA is affecting patients and their care, I contacted Vicki Kennedy, LCSW, Vice President of Program Development and Delivery, Cancer Support Community, which provides patient education, assistance, and support to patients with cancer across the United States.
Commenting briefly about the ACA, Ms Kennedy noted that “anecdotally, we have patients and caregivers calling our Cancer Support Helpline who have referenced that without the ACA they would not be receiving cancer treatment, but they are in need of further assistance with co-pays, transportation, living expenses, mental health issues, among other services. The cost of care penetrates deep into a family who has to make choices every day—‘fill my prescription, or buy groceries; pay my co-pay, or my heating bill, etc.’”
Ms Kennedy added, “Many families are getting by and express gratitude that they now have insurance, but their worry doesn’t end there. I sense that while the government has tried to fix part of the system (access to insurance), there is still much work to be done in controlling cost, fraud, high malpractice costs, and all the other essential parts that plague our healthcare system. I confess I tend to talk to more cancer patients who are relieved that ACA exists than those who are angered by it.”
She directed me to her colleague, Linda House, MSM, BSN, RN, President of the Cancer Support Community. Ms House commented that many of the issues discussed here are not necessarily a direct result of the ACA, but rather the result of the implementation of ACA. She focused on the pros of the ACA and is taking a wait-and-see approach to the cons. She says that the pros of the ACA include no lifetime limits, improved coverage of clinical trials, and removal of the preexisting condition clause. She did note that there has been an increase in cost, copays, out-of-pocket expenses, and provider redirection, but she hesitated to blame that on the ACA. Rather, she said that more patients are in need of services and support, patient coverage appears to be less inclusive of drugs and services, and if patients do have the covered services, the out-of-pocket costs and copays are so high that they may opt out of receiving treatment altogether. She encourages oncology practice managers to review the Cancer Insurance Checklist available at www.cancerinsurancechecklist.org, which may be a helpful resource.
Ms House also informed me of the Cancer Support Community’s latest white paper study and patient–provider video that are focused on the patient experience.2,3 The video is filled with heart-wrenching interviews with patients who recount how the system has repeatedly let them down, cost them more money, and does not allow them to receive treatment at some of the top cancer centers or to see the most reputable oncologists (not all of these issues can be directly ascribed to the ACA).3 In the video, providers discuss how some patients choose not to have expensive treatments, because they do not want to overburden their families.3
I also spoke with Patricia J. Goldsmith, Chief Executive Officer of CancerCare. CancerCare is another incredible organization that does amazing work to support, educate, and care for patients with cancer and their families. According to Ms Goldsmith, the organization has witnessed an increase in demand for support services, such as transportation, babysitting, cleaning services, and financial support; however, she finds it difficult to attribute this increase in demand for services solely to the ACA. She believes that more time is needed to fully assess the impact of the ACA, and hopes that patients will begin to see improved coverage and enhanced benefits.
The ACA and Cancer Care
Robert Goldberg, PhD, Vice President and Co-Founder, Center for Medicine in the Public Interest, stated in a 2013 article that “millions of Americans with cancer and other chronic illnesses will wind up paying more for lifesaving care, if they can get it all.”4 He noted that in an effort to keep cost under control, the White House had created a cut-rate HMO. The low profit margins have forced insurers to downsize the number of physicians and hospitals in their networks, and to slash what they cover for out-of-network treatment.4
Dr Goldberg notes that some health plans do not cover the majority of leading cancer centers and the top physicians, which can be devastating for some patients. All across the country, renowned cancer centers, such as New York’s Memorial Sloan Kettering Cancer Center, are excluded by the largest health plans.4 California’s Cedars-Sinai Cancer Center has been excluded from all ACA plans, and only a few plans include the Mayo Clinic. In Washington state, the largest exchange plans exclude world-class cancer care for children, such as the Seattle Cancer Care Alliance.4 Although patients can receive care from out-of-network entities, they will typically have to pay the full price for these services.
The article cites an example of a cancer survivor whose monthly premium was approximately 50% of his monthly take-home pay; however, he did not mind, because his plan covered all his treatment—more than $350,000—and allowed him to see the top specialists, including physicians from the Mayo Clinic, with an out-of-pocket expense of only $4500.4 However, the introduction of the ACA forced the insurer to stop that old plan, which, in turn, forced the patient into a plan that fits the ACA rules. As a result, that patient:
- Can no longer keep his Mayo Clinic physician (who kept him alive for 7 years)
- Will have to pay $26,000 out of pocket
- Will pay more for drugs.
Dr Goldberg referred to 2 studies by Avalere Health that further underlined the financial burden patients may experience under the ACA. One study showed that up to 90% of ACA plans will force patients with cancer to cover 50% of the cost of new drugs until they hit their out-of-pocket maximum; conversely, only 29% of non-ACA, employer-based plans do so. The second study showed that patients are 4 times more likely to stop using innovative therapies if they have to pay $500 or more.4 According to Dr Goldberg, the concern is that some patients will sacrifice receiving appropriate treatment in an effort to not burden their families with financial debt.
I cannot say for certain that the ACA has made oncology care better or worse, but I can certainly say that there appear to be more patients with financial needs than before, and this is troubling. It is important to note that just having insurance does not guarantee people the care they need by the doctors or hospital they want. Patients with cancer and others with serious illnesses are struggling just to stay alive; if the ACA has truly been created to make healthcare affordable “for the sickest among us,” then I am giving it a “needs improvement” grade. I will continue to monitor the impact of the ACA on cancer care, and hope it improves during the next 12 months.
- PhRMA. New report: many exchange plans burden the most vulnerable patients with high out-of-pocket costs for vital medicines; patients left with limited access. Press release. June 11, 2014. www.phrma.org/media-releases/many-exchange-plans-burden-the-most-vulnerable-patients-with-high-outofpocket-costs-for-vital-medicines#sthash.g8U4N2wf.dpuf. Accessed October 16, 2015.
- Cancer Support Community. Insight into patient access to care in cancer. March 2015. www.cancersupportcommunity.org/General-Documents-Category/Policy/Insight-into-Patient-Access-to-Care-in-Cancer.pdf. Accessed October 16, 2015.
- Cancer Support Community. An insight into patient access to care in cancer. March 19, 2015. YouTube. www.youtube.com/watch?v=r9Vn4MaXcKs. Accessed October 16, 2015.
- Goldberg R. Death by Obamacare: ‘reform’ reams cancer patients. New York Post. November 12, 2013. http://nypost.com/2013/11/12/death-by-obamacare-reform-reams-cancer-patients/. Accessed October 16, 2015.