The Affordable Care Act & sarcoma survivors

By Suzie Siegel

"Obamacare" will help many sarcoma survivors, but doesn't fix all the problems faced by people with rare cancers.

Under the Patient Protection and Affordable Care Act, called ACA or Obamacare, each state will set up a Health Insurance Marketplace to make affordable policies available from private companies. The federal government can create one if a state doesn't act. The process is expected to start Oct. 1.

The Marketplaces should help sarcoma survivors who couldn't afford insurance before or couldn't get a policy because of their medical history.

But many patients who are already covered find that their insurance company will not let them go out of network to see a sarcoma specialist for a second opinion, let alone continuing care. The ACA won't change this.

Some states and big cities have no sarcoma specialists. Of course, this differs from common cancers, in which patients are more likely to find specialists near home.

That's why we have a page to help people get insurance authorization for a referral. We also offer reimbursement up to $500 for people who need a second opinion from an expert.

People who don't have insurance through the government or their employer will be required to buy a policy from a private company, or be penalized. They can be exempt for religious reasons and financial hardship.

Major provisions of the ACA will take effect Jan. 1. People with existing policies may see little change. Insurance plans that were created before the law passed March 23, 2010, and have not been changed significantly will be "grandfathered in."

Under the ACA, insurance companies can no longer set lifetime dollar limits for "essential health benefits." The American Society of Clinical Oncology is working on a list of cancer-specific benefits, according to ASCO staff.

Brietta Clark, JD

"The law will provide more access to prevention services and treatment for many people, and it will protect them from financial catastrophe," said Brietta Clark, JD, a professor at Loyola Law School in Los Angeles.

"Under health-care reform, one way that insurance companies will try to control costs is through drug formularies," she said. A formulary is a database of medications that an insurance company will cover, as well as what percentage they will pay. The company may charge more for an expensive drug, and that has been a concern as more people get chemo in pill form.

The ACA will require insurance companies to cover routine costs associated with a patient's participation in a clinical trial. Now, some states require coverage, and others don't.

Matthew Anderson, MD, PhD

"I'm optimistic that this law will increase much needed access to care for many people," said Sarcoma Alliance board member Matthew Anderson, MD, PhD, director of clinical and translational cancer research in gynecologic oncology at Baylor College of Medicine in Houston. "I'm particularly excited because provisions of the ACA may help sarcoma and other patients access experimental treatments under circumstances where this previously may not have been possible." 

Because sarcoma is rare, it can be hard to get enough patients for the large clinical trials required for FDA approval. As a result, few drugs are approved for the disease; many patients get chemotherapy that was approved for a more common cancer.

It's still uncertain how insurance companies will pay for such off-label use under the ACA.

"One of the challenges that existed before health-care reform and will continue is who will pay for experimental treatment and how is efficacy being studied," said Clark, who specializes in the inequities of health-care law.

"Another challenge is when you talk of life-saving treatment, what are the trade-offs? The ideal is a system where patients and families can be really educated about all of the options and let them hear from people who have been there. They need to make decisions consistent with their values.

"The so-called 'Death Panel' was designed to help families do that. It would have paid for physicians' time to explain fully what the options were."

When some sarcoma survivors are eligible for Medicare, they choose Original Medicare, which gives patients more options on which doctor to see. Medicare Advantage and other plans may not pay for a sarcoma specialist out of network.

The law will not change Medicare Supplement Insurance, called Medigap, which picks up costs not covered by Original Medicare. In many states, companies that offer Medigap to seniors can refuse policies to people under 65. Or, they may be required to write only the most basic policy.  

There are only a few time periods when an insurer is required to write a Medigap policy despite pre-existing conditions. 

The Kaiser Family Foundation has noted that premiums for people under 65 are generally higher than for people 65 and older. Plan F premiums averaged 73 percent higher. (I pay almost $500 a month, for example.) Because of the younger age of sarcoma patients, this affects them more than many other cancer patients who are already 65 or older.  

The law allows doctors and hospitals to "bundle payments" from Medicare, instead of charging a fee for each service. When a patient has surgery, for example, a hospital might send one bill to Medicare, instead of having the surgeon, anesthesiologist, physical therapist, etc., bill separately.   

The goal is to save money and improve patient care by encouraging health-care providers to work together. Whether that will happen is unclear, according to the Rand Corporation.

Other provisions should help sarcoma survivors. The ACA:

1. Extends family insurance to members under 26 years old. This is especially important for sarcoma survivors because sarcoma represents 15 percent of childhood cancers. Even if a child or young adult no longer has cancer, they still need follow-up care.

2. Requires insurance companies to cover pre-existing conditions. They can't reject applicants or charge higher premiums because of medical history. On average, sarcoma strikes younger people than more common cancers, such as breast, colon and prostate cancer. If cancer survivors cannot get Medicare, some have found it hard to get insurance that will cover a recurrence.

3. Stops insurers from dropping someone because they get sick.

4. Requires companies with more than 50 full-time employees to  provide health insurance.

5. Expands the number of people eligible for Medicaid in states that have accepted the program. Click here to see if your state is participating. In some states, a person without children cannot get Medicaid, no matter how poor they are. 

6. Phases out the gap in drug coverage for Medicare Part D by 2020.

Because the law is so complicated, people should expect delays as it's fully implemented.

At the Alliance, we recognize that some people dislike the law because of their political principles, or feel they will be hurt as taxpayers and business owners. This post was designed to discuss only the health-care issues.

My thanks to the ASCO staff for their help.