Action Alert: Speak up on value of rheumatoid arthritis treatments

Speak Up: Don’t let insurance industry block arthritis treatments

No voice is more profound that when the patient’s voice speaks up and fights for our health care. And this week, we’re encouraging action to help patients with rheumatoid arthritis gain access to the rheumatoid arthritis treatments they need and deserve.

The insurance industry-backed Institute for Clinical and Economic Review is accepting public comments on its evaluation report of what it concludes is the effectiveness and value of 11 rheumatoid arthritis treatments.

It may seem a bit obscure. How does a bureaucratic report by an insurance industry ally organization affect patients?

Our co-founder and executive director Terry Wilcox explains that ICER publishes these reports to influence the approval decisions of insurance companies and government agencies, such as Medicare and Medicaid.

Unsurprisingly, given its extensive ties to the insurance industry, ICER’s track record isn’t good when it comes to patients. Not only are patients routinely excluded from the decision-making process, but the organization has a narrow focus on soulless backroom number crunching. Patients are considered for their economic value. Our value reduced to “quality-adjusted life years” — as accountants determine whose life is worth it.

We’re urging fellow patients to submit their comments to make sure that their perspective is included.

Rheumatoid Arthritis Treatments: How to submit your comments

You can submit written comments on ICER’s Draft Evidence Report, which will be published on ICER’s website. The organization has several restrictions on public comments.

The comments can only be submitted by sending an email attachment to ICER will not consider any comments submitted after 5PM on February 17, 2017. Furthermore, you must conform to the following style requirements:

  • Times New Roman,
  • 12-point font size
  • 5 pages maximum (excluding references)
  • Word document (no PDFs)
  • Electronic copy only

Patients can also request to speak at ICER’s March 24 meeting by sending an email to

Administrative barriers add to suffering for rheumatoid arthritis patients

Every patient living with rheumatoid arthritis should have access to the right treatment when they need it.

As we’ve noted, when a health insurance company, government agency or pharmacy benefit manager drops coverage of a medication, it causes major problems for patients. In effect, the judgment of a doctor is swapped in favor of an accountant. Patients are told that the treatment they need — the treatment that is right for them — is not available.

In some circumstances, insurance companies use these “value frameworks” to delay the right treatment with administrative barriers to limit access. For many patients, changing medications can cause weeks or months of side effects. And that’s under the best case, even assuming the new treatment works. One rheumatoid arthritis patient describes what it means for patients when a provider drops coverage of treatments.

“Jumping through hoops may not seem like a big thing to somebody that doesn’t have to live with the condition,” Nicole Martin, 33, of Blaine, Ky., who has rheumatoid arthritis and takes Enbrel, told the New York Times. “But even being a day or two behind can cause massive issues for somebody.”

What is Rheumatoid Arthritis?

An autoimmune disease, rheumatoid arthritis tricks a patient’s immune system into attacking our joints. About 1.5 million American patients live with rheumatoid arthritis, according to the Arthritis Foundation.

“Having rheumatoid arthritis is like spraining all your joints at once and having someone wrap them all with tiny heating pads while they force you to move,” says Daniel Malito, who has lived with rheumatoid arthritis for 30 years. “Fatigue, fatigue, fatigue. I’m so tired, all the time. I need more coffee. I need more caffeine pills.”

Common symptoms include swollen joints, joint stiffness, fatigue, fever and weight loss. Patients are also at a greater risk of heart problems as a result of hardened and blocked arteries.

“When a person has lived with rheumatoid arthritis for a long time, the emotional and physical stress also can worsen existing pain,” explains Creaky Joints, a part of the nonprofit Global Healthy Living Foundation. “The pain can be extremely debilitating, impacting quality of life and the ability to perform simple daily tasks such as holding a cup, writing or going up stairs. It can also lead to fatigue, general malaise or feeling unwell and even loss of appetite.”

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