Decisions on patients must involve the patients

Health care reform is focused on getting better access and better care to those who need it. But one provision is positioned to do just the opposite. Created under the Patient Protection and Affordable Care Act (PPACA), the Independent Payment Advisory Board (IPAB) is an unelected group that could end up severely limiting patients' access to necessary treatments and undermine quality improvements in the process.

Both Republicans and Democrats have called for the repeal of IPAB.

Innovative, new treatments are the lifeblood of our healthcare system. They have contributed to declining death rates for patients battling diseases such as HIV/AIDS (85 percent decline since 1995), heart disease (30 percent decline between 2001 and 2011) and cancer (20 percent decline between 1999 and 2006). Patients suffering from these and other diseases far and away have the most to lose if affordable access to these types of innovative treatment is curtailed.

And yet the patient voice is conspicuously absent from the process for developing IPAB's proposals to Congress, as there is no mandated role for patients in its membership.

Medicare's actuaries estimate program spending is above a level pre-determined in law. And starting next year, IPAB will be called upon to present Congress with recommendations for reducing Medicare spending.

This may not seem like a big deal at first blush because advisory boards make recommendations to Congress and to federal agencies all the time. However, IPAB has been given an unprecedented amount of authority. Most advisory board recommendations are reviewed, considered and then accepted or rejected by Congress (or the relevant federal agency). In this unique case, IPAB's recommendations become law unless Congress passes its own plan with a 3/5 majority in the Senate. As we've seen before, that kind of quick compromising is about as likely in Washington as snow in July.

The more likely scenario is that IPAB's decisions stand. And, contrary to what some might like to believe, the recommended savings are unlikely to materialize from delivery system reforms and patient care improvements.

Hospitals, which play a significant role in determining how care is organized and delivered, are exempt from any IPAB-recommended payment cuts until 2020. As a result, the Congressional Budget Office has said the Board is likely to focus its recommendations on changes to physician provider payment rates and methodologies. This translates into less choice for doctors, less access to Medicare, and higher prices for medicine and the treatments patients need.

Because of the way the law was written, IPAB can make decisions that could ultimately result in some treatments or medications no longer being covered. Unfortunately, new, innovative and rare treatments, including those for HIV/AIDS, may be among the easiest targets. The rationale is that these are often the most costly of therapies.

What this overlooks is the downstream savings these same treatments have in helping to avoid hospitalizations and unnecessary procedures, not to mention the potential lives saved.

There is no question that our country needs to do more to control healthcare spending. However, giving an unaccountable board the right to make changes to a program that millions of patients depend upon without Congressional approval - or patient input - is the wrong approach.

Congress must act now to repeal IPAB and ensure patients don't lose access to patient care or life-saving innovations. We thank Idaho's members of Congress for their leadership in supporting the repeal of IPAB and ensuring that patients continue to have access to quality care and life-saving innovations.

Stacie Lechot, LSW, is executive director of the North Idaho AIDS Coalition in Coeur d'Alene.