Health care law did not end discrimination against those with pre-existing conditions

By Kay Tillow
Firedoglake, MyFDL, March 6, 2015

In 2010 the giant health insurance company WellPoint created an algorithm that searched its database, located breast cancer patients, and targeted them for cancellation of their policies.

A few years earlier Michael Moore’s stunning documentary, “Sicko,” showed an unending list of illnesses that had been used by insurers to refuse to sell people policies, to charge them much more, or to deny payment for “pre-existing conditions.”

The public became acutely aware of these harmful, widespread practices and sharply condemned them. So it was not by chance that this insistent popular support resulted in inclusion of a ban on these practices in the Affordable Care Act (ACA) that was passed in 2010.

The government website explains. “Your insurance company can’t turn you down or charge you more because of your pre-existing health or medical condition like asthma, back pain, diabetes, or cancer. Once you have insurance, they can’t refuse to cover treatment for your pre-existing condition.”

Even some Republicans who are trying to repeal the ACA insist that they stand for keeping a provision against such discrimination. “We would protect people with existing conditions,” sayReps. Paul Ryan, John Kline, and Fred Upton.

Regardless of opinions on mandates or the health reform law in general, the entire nation embraced the part of the legislation that outlawed discrimination on the basis of illness.

So we’ve won, right, at least this much reform? Sadly, no.

Last July, over 300 patient advocacy groups wrote to Sylvia Burwell, Secretary of Health and Human Services, to express their concerns. “(W)e are increasingly aware of evidence that new enrollees, especially those with chronic health conditions, are still facing barriers to care,” the letter said.

The groups that signed the letter are well known. They include the American Lung Association, Epilepsy Foundation, The Leukemia and Lymphoma Society, National Alliance on Mental Illness, The Parkinson’s Association, Easter Seals, and the AIDS Institute. They praised the ACA for helping many of their members to finally get coverage. All of these groups supported the ACA prior to its passage and still do.

The letter urges action against discriminatory benefit designs that limit access for patients that were subjected to pre-existing conditions restrictions prior to the ACA. They spell it out. Some plans do not include all the drugs prescribed for enrollees. Some plans don’t cover critical medications including combination therapies. Plans can remove medications during the plan year. Some plans are restricting access to drugs by requiring prior authorization, step therapy, and quantity limits. The network of physicians and hospitals in some plans is so narrow as to deny patients the specialty care needed. Much of the information needed for patients to choose the most appropriate plan is not available.

The letter details the damage. High cost sharing means patients don’t get the drugs they need.  Some plans sold on the exchanges require patients to pay 30, 40 or 50% for drugs that go for several thousand dollars a month. HIV drugs, certain cancer medications, and multiple sclerosis drugs are among them.

The Leukemia & Lymphoma Society found exchange plans in several states that charged patients with blood cancer as much as 50% co-insurance rates.

Charis Hill, a biking enthusiast from Sacramento, California, counted on the medication Enbrel to keep her moving despite her diagnosis of ankylosing spondylitis.  But then the cost went up to $2,000, far more than she could afford. “Insurance companies are basically singling out certain conditions by placing some medications on high-cost tiers,” Ms. Hill said. She called it “pretty blatant discrimination.”

Julie Davis, a young wife and mother of two from Louisville, Kentucky, is struggling with the consequences of this failure to end the discrimination. Her epilepsy medication, Keppra, that had kept her stable and seizure free suddenly skyrocketed from $60 per month co-pay to $1,200.  The high price forced her to change medications in spite of the professional judgment of her physician. The seizures returned. With the problem not yet solved, Ms. Davis has written an Op Ed and testified before the Kentucky Senate Health and Welfare Committee. She and her organization, the Epilepsy Foundation of Kentuckiana, are publicizing the injustice and working to pass state legislation to cap drug co-pays in Kentucky.

HIV/AIDS patients have had to struggle to obtain the drugs crucial to their survival. Carl Schmid, deputy executive director of the AIDS Institute, asserted that “limited benefit coverage, cost-sharing for medications that can reach as high as 50%, and lack of transparency … mean many patients … are not receiving the care and medications they need.”

Even the insurance commissioner of the state of Washington, Mike Kreidler, said “there is no question” that “discrimination is creeping back.”

After spelling out the many ways in which patients with chronic conditions are denied access to medications and specialists, the letter concludes: “We believe these practices are highly discriminatory against patients with chronic health conditions and may, in fact, violate the ACA non-discrimination provisions.”

On October 27, 2014, Secretary Burwell responded to the letter. She said they would take a look at all of the issues and work to make it better for the future.

The dialog between Burwell and the patient advocacy groups continues. The advocacy groups urge a crackdown on the companies that continue to discriminate.

As of February 2015, a study by Avalere Health found that some exchange plans place all drugs used to treat complex diseases – such as HIV, cancer, and multiple sclerosis – on the highest cost-sharing tier. In 2015 an even higher number of the plans in the exchanges have placed drugs necessary for special conditions on tiers out of reach for patients. “In spite of the pushback, it’s getting worse, not better,” said Don McCanne, MD, Physicians for a National Health Program policy expert.

When patients can see that their medication is not covered or is far too expensive, they will avoid those plans. That will allow those insurers to “lemon drop,” to keep those who have expensive chronic conditions out of their plans. The impact is the same as underwriting and rescission. Good for profits, bad for patients.

Insurance companies have more tricks than wily coyote. Their power at the center of our profit-based health care system leaves them in position to defy the law and call the shots. With most of the enforcement left to understaffed state regulators and violations ubiquitous, we can expect the insurance companies to continue to avoid the sick, to price care beyond their reach, and to find ways to refuse payment.

No other nation in the industrialized world allows insurance companies to run their health care system. Discrimination is inherent in for-profit health care. The United States has tried every solution that the insurance companies and their paid experts can devise. It’s now time to admit that to end the discrimination we must move to single payer public financing that frees our health care from the control of the insurance and drug industries.

Kay Tillow is a leader of Kentuckians for Single Payer Health Care and the All Unions Committee for Single Payer Health Care--HR 676. She resides in Louisville, Ky.