The Daily Rise: Tuesday, May 24

Not so NICE

Patients don’t need to imagine what life is like when bureaucrats control our medical decisions. All we need to do is look across the pond.

Wayne Winegarden, a Senior Fellow in Business and Economics at the Pacific Research Institute, draws parallels between ICER’s work to restrict patients’ access to life-saving treatments with the United Kingdom’s National Institute for Health and Care Excellence. And the British system delivers results that are not so nice for patients.

“The problems of the National Institute for Health and Care Excellence in the U.K. exemplify the problem, and are a cautionary tale for ICER, which is taking methodology cues from NICE,” he writes in a piece published at the Orange County Register. “In the absence of an effective price system, ICER is attempting to be the NICE of the U.S. and determine which innovations are valuable for patients. This is a herculean task at best, and when coupled with ICER’s unanswered methodological questions, Californians should be wary of basing their families’ health care coverage decisions on ICER’s conclusions.”

Setting aside the larger debate over a British-style national health care system, we know from numerous patient stories the horrors of price-focused bureaucrats restricting access to treatments. Citing the UK’s Independent, one “woman awaiting a transplant for a rare condition that has destroyed her kidneys had her operation canceled at the 11th hour because the government refused to pay for the drug she needs to prevent the organ being rejected.”

ICER’s attempts to emulate NICE won’t be nice for patients.

There’s an App for That

Is your arthritis getting worse over time? Now, there’s an app that can help the one-fifth of American adults who suffer from arthritis track their progress over time.

As part of Arthritis Awareness Month, Ben Nowell and Kelly Clayton of the Arthritis Partnership with Comparative Effectiveness Researchers (known simply as ArthritisPower) recently updated the Patient-Centered Outcomes Research Institute on how they’re using technology to help patients.

ArthritisPower is using a smart phone app to collect information from patients on everything from how they slept to their overall quality of life. These patient-reported outcomes are helping researchers develop better treatments and giving doctors data for helping their patients. More than 2,000 patients have signed up — with more expected as the project launches a new version with enhanced features.

“The ultimate goal of ArthritisPower is to provide participants with a personalized understanding of their own health while producing data that can help everyone,” the group explains. “It will enable researchers to study topics that are meaningful to patients and help patients make healthcare decisions according to personal circumstances, conditions, and preferences.”

Closing Soon: Community Clinics

Community clinics, which deliver vital care to small towns and rural communities, are likely to be among the first victims of the Centers for Medicare and Medicaid Services’ proposed changes to Medicare reimbursement rates.

Over the past decade, community clinics haven’t fared well. According to the Community Oncology Alliance, more than 300 cancer clinics have closed their doors in recent years. Dr. Jeffrey Vacirca, CEO and chief of clinical research at NSHOA Cancer Center, warns in a recent Wall Street Journal piece that it’s only going to get worse.

“The drastic cuts the Obama administration plans will prompt more closings, especially in rural areas, making it even harder for many cancer patients to be treated,” he writes. “In some communities, oncologists and other specialists already send their Part B patients to hospitals for treatment because they can’t afford to administer it in-house.”

And that’s the great flaw in the CMS proposal: by lowering reimbursement rates, more patients will seek treatments in hospitals, thereby driving up the cost of health care. Calling the proposal “a slap in the face to the nearly one million American physicians who have dedicated their lives to patient car,” Vacirca explains just how dire the consequences.

“This is a dangerous experiment on the medical care provided to seniors,” he says. “It is also as clear a threat to the American health-care system as I have ever seen in my 18 years as a doctor. Congress needs to stand up for America’s seniors and reject this perverse experiment outright.”

Tune in at 11AM

Do you think patients should be given the treatment they need when they need it?

This morning at 11AM EDT, we’ll be hosting a news briefing live in St. Louis addressing the impact of ICER’s “value” determinations for new multiple myeloma therapies along with the Alliance for the Adoption of Innovations in Medicine (Aimed Alliance) and the Center for Medicine in the Public Interest (CMPI). It’s part of our effort to educate patients at tomorrow’s meeting of the Comparative Effectiveness Public Advisory Council, the Midwest affiliate of the Institute for Clinical and Economic Research.

For those late risers on the West Coast, grab your morning coffee and watch the replay. Our briefing will be streamed live online to enable stakeholder participation. No advance registration is required.

Beyond the myeloma community, this briefing has widespread significance for stakeholders because ICER’s meeting signals the beginning of a multi-year effort to limit the utilization of targeted therapies for many cancers and hard-to-treat diseases.

Join us online live from St. Louis this Tuesday 10:00am CST / 11:00am EST to learn more about the attacks on your treatments. Follow us on Twitter using the hashtag #ICERWatch.

You’ll receive updates about new resources, patient stories and insights, advocacy work, and alerts about patient-support events.

The latest about patient advocacy

Join our Email List

Get notified about new stories and resources to empower patients and caregivers.