Chronic Disease Coalition

Discrimination Issues:

The Affordable Care Act is, among other things, designed to prevent health insurers from discriminating against patients with chronic conditions. Discrimination can come in many forms. The most common form of patient discrimination comes when insurers try to save money by forcing patients into inappropriate or inadequate treatment regimens. The CDC was formed and fights every day to stop this kind of discrimination. The CDC’s mission is to help ensure – through advocacy – that chronic disease patients have access to the care that they require and are legally entitled too.

Discriminatory Plan Design

The issue: Health insurance plans are designing benefits to keep out sicker (and more expensive) patients.

One way insurers are attempting to discriminate against chronic disease patients is through creating discriminatory network and benefit design. This is when an insurance provider designs its network with the intent, stated or otherwise, of denying patients’ coverage they would otherwise be entitled too.

This has been done in several ways:

  • Treating essential drugs or services like dialysis as a different category or out of network, thereby forcing patients to cover the cost of their treatment out of their own pockets (without a maximum on how much they have to pay).
  • Excluding certain providers who may be the only treatment options within a geographical region. This forces some patients – especially those who live in rural areas – to travel long distances for the treatments they need (or simply go without it).
  • Prematurely shifting patients onto Medicare – without informing them of the possibility of higher co-pays, a smaller network of providers or the elimination of benefits for their dependent family members.
On Jan. 29, 2015, a national study published in The New England Journal of Medicine confirmed evidence that insurers are using tactics to dissuade higher-cost patients from enrolling on their plans.

In 2016, an Idaho couple was refused in-network coverage for treatment of kidney disease.

In 2014, more than 300 patient advocacy groups, including the American Lung Association, the Epilepsy Foundation and United Cerebral Palsy, wrote to the Department of Health and Human Services out of concern that insurers were utilizing tactics that were “highly discriminatory against patients with chronic health conditions.”

A Sept. 2, 2015, letter to the Oregon Insurance Division advocates against insurances companies’ attempts to shift kidney dialysis patients from private plans to Medicare, where they are likely to see their costs go up and the quality of their coverage go down.

An Oregon woman living with psoriasis and patients with HIV and other chronic conditions illustrate the sad consequences when insurance companies use tactics to limit access and treatment for chronically ill patients in this June 11, 2015, piece on Marketplace.

The Leukemia & Lymphoma Society notes bias against blood cancer patients in multiple states, and the National Multiple Sclerosis Society is mentioned as targeting the same issue in this May, 30, 2014 article by The Associated Press.

The National Association for Mental Illness recently published a survey, supplemented by an analysis of 84 health plans in 15 states, that shows a long way to go for health plans to achieve parity for mental health care. This despite the fact that most states, including Oregon, have mental health parity laws in place.

A Jan. 28, 2015, Washington Post article numerous cases of insurance companies’ bias against patients with chronic conditions across the United States: Washington Post, Jan. 28, 2015.

Charitable Premium Assistance Bans

The issue: Insurance carriers are screening out patients with chronic conditions by prohibiting their use of financial assistance programs.

For many patients, especially those suffering from long-term chronic conditions and in the greatest need of financial help, independent charities provide a lifeline in the form of third-party payments for insurance premiums. This charitable premium assistance is often essential for people with conditions such as cancer, hemophilia, kidney disease, HIV and rheumatoid arthritis to afford their health care.

But some insurance providers are now attempting to discriminate against sicker patients by saying they will no longer accept premium assistance payments from nonprofit organizations. If a commercial insurance plan will not allow patients to use this crucial financial assistance, those patients may be forced to seek coverage elsewhere – which often leads to diminished treatment options. Simply put, this is a sneaky, backdoor way for insurance companies to get the sickest, most vulnerable and most expensive patients off their plans.

The National Hemophilia Foundation wrote a letter to a health plan executive for Idaho and Washington speaking out against a company’s efforts to ban third-party payments for patients with bleeding disorders.

In a Jan. 26, 2016, state complaint, an Idaho man sought help to stop an insurer from refusing payments from the American Kidney Fund to help him afford lifesaving dialysis treatments, without which he will die. We know these cases are on the rise.

A dying cancer patient in New York nearly lost her insurance coverage after accepting help with premium payments from the Leukemia & Lymphoma Society, a nonprofit that not only helps patients but funds research.

Step Therapy (or “Fail First”) Requirements

The issue: Insurance companies are trying to step into the role of primary care provider, requiring patients to take a different medication than what their doctor prescribed before they can get the appropriate treatment.

Step therapy is the practice in which patients are forced to try cheaper treatments before they are allowed to try more expensive ones, even if their doctors are confident the less expensive treatments will not help them. It’s one way insurance companies are trying to keep their profit margins high, even if it means creating obstacles for patients trying to get the health care their doctors have prescribed.

A woman with lupus suffered severe vision problems after an insurer made her try multiple medications before it would pay for one that her doctor originally prescribed. In another case, a lung cancer patient took a break from what had been a successful chemotherapy regimen, and when she needed to go back on it her insurer would not let her resume treatment until she tried other, cheaper drugs.

Kenneth Bandler, a member of the National MS Society, recently published a letter noting that MS patients suffer from step therapy as well. “For many the right medications and following the prescribed regimen by a doctor who is familiar with the patient are essential to living their lives as fully as they possibly can,” he wrote.

Karin Keyes, a psychotherapist in New York, was diagnosed with rheumatoid arthritis and responded well to Orencia, but her insurer wouldn’t cover it unless she tried a far less expensive treatment first. While that one helped slightly, she was still in pain and had to wait to switch insurers to get the treatment she needed.

Kathleen Arntsen of the Lupus and Allied Disease Association in New York wrote that step therapy “can have dire implications and dangerous consequences for autoimmune patients like me who don’t fit a one-size-fits-all treatment standard.”

Adverse Price Tiering

The issue: Insurers are putting different types of drugs in different tiers, with each tier requiring patients to foot a different portion of the bill.

A recent study by the Harvard T.H. Chan School of Public Health found that adverse price tiers can put a “substantial and potentially unexpected strain on people with chronic conditions.”

“Insurers may be using benefit design to dissuade sicker people from choosing their plans,” Harvard researchers said. “A recent analysis of insurance coverage for several other high-cost chronic conditions such as mental illness, cancer, diabetes, and rheumatoid arthritis showed similar evidence of adverse tiering.”

How can you help? Patients and those who want to help give them a voice can stay on top of these developments and speak up for patients by joining the coalition.

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