March 2017 Edition Vol.11, Issue 3

Cancer Patients Face Uncertainty with ACA’s Repeal/Replace

By Christina Bennett, MS

With the unveiling of the American Health Care Act (AHCA), the idea of replacing the Affordable Care Act (ACA) has become more real. More than 11.5 million Americans signed up for health insurance through the ACA for 2017 coverage, but it is unclear whether they will be able to keep this coverage next year.1 Who else could be affected by the potential changes also remains uncertain.

“I think the right word to describe the atmosphere over the last couple months has been one of uncertainty and anxiety—both on the part of the providers and the patients,” said Jennie Crews, MD, FACP, President of the Association of Community Cancer Centers (ACCC) and medical oncologist at the Seattle Cancer Care Alliance Survivorship Clinic.

The proposed legislation has been met with much criticism and has been publicly refuted by the American Society of Hematology (ASH), American Medical Association, and other groups and associations.

In a policy news article, ASH stated they have “serious concerns that this piece of legislation will reduce overall access to coverage and treatment and would greatly impact patients with hematologic diseases and disorders.”2

Echoing this sentiment is David Oubre, MD, President of Pontchartrain Cancer Center, a private practice group in Louisiana, “We’re just worried about our patients not being able to get access to care,” he said.

Some of Dr. Oubre’s patients are in the middle of chemotherapy treatment and receive insurance through the exchanges created by the ACA. He said the idea that “they may become uninsured for care that is potentially life-saving is extremely bothersome.”

“If patients lose their health insurance, they will no longer be able to afford their treatment,” Dr. Oubre said adding, “The exchanges are their only mechanism by which they can get reasonably affordable healthcare.”

Ted Okon, MBA, Executive Director of Community Oncology Alliance, said he was not surprised by the AHCA legislation. He said this proposed legislation would impact “first and foremost” those people who purchase insurance through the exchanges. However, “because this is an ecosystem, you change one part of it, and it has an impact on everybody.”

He said the implementation of the ACA in the insurance market “affected everything,” so likewise effects will be seen “across the board.”

Mr. Okon noted that the Republicans were “pretty clear” they would repeal the individual mandate, which required Americans to obtain health insurance or face a tax penalty, and use “some form of tax credit” to subsidize the costs of getting insured.

About repealing the individual mandate, Dr. Oubre fears “many people will choose not to buy health insurance and our numbers of uninsured patients will go back to pre-Obamacare levels.”

 

Patient Perspective

Christine Griffiths, a breast cancer survivor of 9 years in Washington State, is concerned that her premiums could become unaffordable for her in the future—meaning she could lose access to care. She is currently covered through a private insurer because she did not qualify for subsidies for any plans offered through the exchanges and also wanted insurance that could cross state lines.

Her son and daughter live out of state and so it is “imperative” to her that she receive treatment where they live. If her cancer recurred, she would need to live with one of them to receive treatment.

“I make just slightly too much money for the ACA to have helped us, so I private pay my insurance,” Ms. Griffiths said. In 2016 she paid $750 a month, and as of 2017 she pays $830 a month. She said she is scraping by to pay her premiums, but another price hike could make her insurance unaffordable.

Her husband had to stop working three years ago when he was diagnosed with frontotemporal lobe dementia. Being six years older than Ms. Griffiths, he qualified for Medicare, but she didn’t.

 

Effect on Survivorship

Because cancer has become a chronic disease, more people are living longer with this disease—translating to more people with pre-existing conditions who need access to care.

“When I started 20 years ago, they didn’t even keep track of how many cancer survivors [were] in America,” recalled Richard Dickens, MS, LCSW-R, Director of Client Advocacy at CancerCare.

According to a 2016 report, an estimated 15.5 million cancer survivors3 like Ms. Griffiths are in the United States, and this number is expected to reach to 18.1 million4 by 2020. Routine checkups for cancer survivors are critical for catching recurrences or new tumors early, when treatment costs are less expensive.

Ms. Griffiths, for example, visits her doctor once a year and has a colonoscopy once every three years because precancerous polyps have been found during each screening. The polyps are easily removed and she remains cancer-free.

However, individuals—both cancer survivors and those without a history of cancer—could miss out on cancer screening tests if the person loses their insurance.

Megha Shah, MD, medical oncologist at Hunterdon Hematology Oncology, a private practice group in New Jersey, said that some of her patients who gained coverage through the ACA gained access to screening tests, but now those patients are unsure whether they will still have access to care.

Dr. Shah is also concerned about maintaining continuous coverage if and when legislation does take effect. Any gaps in insurance coverage while a patient is undergoing cancer treatment could be “life-altering.”

Currently, the day-to-day care provided to cancer patients has not been affected, based on the observations of Drs. Crews, Oubre, and Shah.

“Patients are still able to right now access their oncologists and their care and have been very diligent about their follow-up and very compliant with their therapy,” Dr. Crews said.

However, from Dr. Crews’ perspective, this upheaval “is certainly impacting the quality of their lives. These are patients who obviously are seriously ill and can have a number of other issues and concerns, and this adds to the burden of that worry.”

 

Concern of Affordability

Some provisions that are beneficial for cancer patients and survivors were kept in the AHCA, namely the requirement to insure individuals with pre-existing conditions and the elimination of annual and lifetime caps, but the affordability of coverage and care remains unclear.

Ms. Griffiths described her cancer treatment pre-ACA as “very, very expensive,” and that it “basically broke our bank.” Within that one year of treatment, she said she nearly met her lifetime maximum for benefits.

Affordability of healthcare, in terms of being able to afford insurance premiums and out-of-pocket costs, is a major concern expressed by Dr. Crews, particularly given how expensive cancer treatment is.

“Many of the therapies that we give can be $10,000 a month or more and incur great out-of-pocket expense because of the percentage of costs the patients are responsible for,” Dr. Crews said. If the amount a patient pays changes, care could become unaffordable.

The AHCA would phase out subsidies for out-of-pocket expenses by 2020, and subsidies for premiums would be changed to a tax credit system based on a person’s age and capped for higher earners. About 9.3 million Americans qualified for advance premium tax credits through the ACA and therefore could be affected.1

In addition, insurers could charge up to five times more for older patients than younger ones. Depending on what the numbers look like, this could put cancer patients and survivors, who are typically older age, at risk for higher premiums.

“It is critical that cancer patients have access to adequate insurance that they can afford,” Ms. Griffiths said, who is facing possibly higher premiums next year, making healthcare potentially unaffordable for her. “And so I’m going to become one of the insured who doesn’t go to the doctor—and that is scary.”

She said she is “horrified” by this new legislation.

In addition to being a patient advocate at CancerCare, Mr. Dickens is a cancer survivor of 25 years and was diagnosed with non-Hodgkin lymphoma when he was 37. He recalled when he needed an allogeneic transplant during the pre-ACA era and had “to go broke” to “become eligible for Medicaid.”

“At that time I was 40 years old. I had to spend down whatever money I had had and began to save for retirement and the future—and essentially that was the only way I could get access.”

The rising cost of healthcare is a related concern, and Dr. Oubre said that “the bill as presented doesn’t truly add much to stem that tide. There’s just the worry out there that nothing has really been done to mitigate the ever escalating costs of oncology care.”

Cost of oncologic drugs was the number one concern for 83 percent of respondents, according to the 2016 Trends in Cancer Programs survey.5

 

What Oncologists and Patients Can Do

What can further complicate the conversation is how much, or how little, patients know about a particular piece of healthcare legislation and the healthcare system overall.

“We would hear a lot of times people saying they hate Obamacare but they have [insurance through the] ACA,” Mr. Dickens said.

Dr. Oubre said patients should “learn about the law, and talk to their doctors, and talk to their congressmen to encourage them to do what’s best for patient care in the United States.”

“It’s also important for oncologists now more than ever to have a voice and to speak up and to influence what is happening on Capitol Hill, and one of the ways that they can do that is through ACCC,” Dr. Crews said.

The ACCC will hold their annual meeting on March 29-31 and includes an event called Capitol Hill Day.6 Through this event, Dr. Crews says they will “hopefully be able to advocate for concerns that we have in maintaining the access and affordability of care for our patients.”

Given the uncertainty of what comes next, Mr. Dickens said providers can “do their best to try to help people just live their day as well as they can and go through their treatment and be hopeful.”

“The task now is to see how they make modifications to [the bill] to actually get it passed in the House and the Senate,” Mr. Okon said. He anticipates changes to be made to the bill because “whether you like it or not” “the ACA has been ingrained in the healthcare system,” and that repealing and replacing the ACA is “easier said than done.”

Editor’s Note: On March 24, 2017, in a stunning development, legislation to repeal the Affordable Care Act has been defeated. House Speaker Paul Ryan conceded that “we’re going to be living with Obamacare for the foreseeable future.” There were not enough votes in the House of Representatives to repeal the ACA and there are no further plans to pursue its repeal.

Resources:

  1. Health Insurance Marketplaces 2017 Open Enrollment Period: January Enrollment Report. January 10, 2017. https://downloads.cms.gov/files/final-marketplace-mid-year-2017-enrollment-report-1-10-2017.pdf
  2. ACA Update. March 9, 2017. http://www.hematology.org/Advocacy/Policy-News/2017/7220.aspx
  3. NCI Division of Cancer Control and Population Sciences: Statistics. October 17, 2016. https://cancercontrol.cancer.gov/ocs/statistics/statistics.html
  4. NCI Cancer Prevalence and Cost of Care Projections: Key Facts. https://costprojections.cancer.gov/
  5. 2016 Trends in Cancer Programs. http://accc-cancer.org/surveys/pdf/Trends-in-Cancer-Programs-2016.pdf
  6. ACCC 43rd Annual Meeting, CANCERSCAPE. https://www.accc-cancer.org/meetings/AM2017.asp

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