2011-03-01

House Leadership Plans to Cut Federal Spending; Advocacy Needed to Protect NIH Funding

House Republican leaders are planning to cut future federal spending down to fiscal 2008 levels for discretionary spending outside of military programs and are headed for a showdown with Senate Democrats over the fiscal year (FY) 2011 and 2012 funding laws.

As this issue of The Hematologist went to press, President Obama was preparing to release his proposed FY 2012 budget, which represents the opening bid in a lengthy federal budget process. Although precise details of the FY 2012 were not yet known, the Obama Administration had previously announced plans to freeze all federal non-security discretionary spending, a promise that, if kept, would make it extremely difficult for Congress to provide any increase in funding for NIH.

Further complicating the process is the fact that the FY 2012 budget and appropriations process has gotten underway even as the FY 2011 process is still being finalized. Because Congress was unable to come to an agreement on FY 2011 funding bills before it adjourned last December, the federal government has been operating under a temporary funding measure, known as a Continuing Resolution (CR). The CR is set to expire March 4, requiring Congress to resolve differences about FY 2011 or shut down the government.

With the current budgetary climate, grassroots advocacy will become more important than ever. The Society strongly encourages all ASH members to visit the online Advocacy Center (grassroots.hematology.org) for the latest information on NIH funding and information on how to easily contact their Members of Congress to support NIH.

The Urgency of Health Reform – Testimony by Nathan Wilkes About the Problem of “Underinsurance” for His Son and Family Because of Hemophilia

In January, the U.S. House of Representatives passed legislation to repeal the Patient Protection and Affordable Care Act (PPACA), the health reform law enacted last year. As this issue of The Hematologist went to press, congressional committees were preparing for a series of hearings to examine the current law and propose alternatives, talk radio throughout the country continued to debate the issue, and the courts were reviewing the law’s constitutionality. In the midst of all of this noise, voices from patients, including those with hematology-related diseases, are rising up to share their perspectives on the urgency for health reform and their appreciation for the new law’s elimination of several discriminatory insurance practices such as pre-existing condition exclusions and lifetime and annual caps on benefits.

Below is an excerpt from congressional testimony presented by Nathan Wilkes. Nathan’s son, Thomas, was born with hemophilia in 2003. At the time, he and his family had great insurance through the high-tech telecommunications company that he helped found, but when the insurance company saw Nathan’s claims (ranging from a few thousand dollars to $750,000 a year for his son), they started to increase the premiums for all the employees and their families. Nathan testified to the difficult decisions his family faced to stay covered when their insurer announced a $1 million lifetime cap.

Mr. Wilkes told the Committee on Energy and Commerce’s Subcommittee on Oversight and Investigations:

The introduction of the cap for the 2006 plan-year started a timer that couldn’t be reversed. I recognized that when, not if, we hit the cap, I would have to make critical decisions related to my work, family, and lifestyle. To go without insurance for even a few months would put us into a “pre-existing condition” category due to my son’s hemophilia and our access to insurance would be severely compromised.

I knew I would have to find some way to maintain private insurance coverage. Over the next few months we considered our options:

1. Quit my job and work for a larger company or the government with a larger risk pool, where my claims would not be noticed as quickly.

2. Have my wife go to work and shift our children to her new employer’s plan. We felt that this would only shift the problem temporarily and we would then need to put our three children into childcare, which was costly and something we did not want to do.

3. Turn to Medicaid for Thomas. By all accounts, Colorado is one of the most difficult states in which to get on to Medicaid. Since we “earn too much money,” the only option would be through a waiver program. We did start this process but his qualification was not certain and the waitlist at the time was around five years. A wait of five days would be a problem for us – five years was out of the question.

4. Get divorced and have my wife – earning no income – qualify for Medicaid. A social worker told us that others have done this in order to provide health insurance for their children.

5. Put Thomas on our state’s high-risk pool, CoverColorado, which has a $1 million cap. At the current rate of claims, this would have been a short-term fix, where we would likely hit the cap in six to 18 months.

6. Start my own consulting business as an employer of two, thus falling into the small group insurance category.

…Maintaining health insurance has been a struggle for our family, but it has allowed me to provide my son with the lifesaving treatment he needs. Thomas is now seven and very healthy, but without reforming the private insurance system in this country this struggle will continue for me. Health reform is critically important to me and the many other individual and families that face high health care costs due to chronic conditions.

Mr. Wilkes testified before the health reform law was enacted. The new law eliminates lifetime limits, places restrictions on annual limits, and prevents insurance companies from denying children coverage based on pre-existing conditions.

Comparative Effectiveness Institute Ramps Up Work

The Patient-Centered Outcomes Research Institute (PCORI) is the new institute responsible for funding comparative effectiveness studies established by the health reform legislation enacted last year. In January, it indicated that it is gearing up to begin work by announcing the members of its Methodology Committee that will shape the way the studies will be conducted. The Committee is charged with developing and updating methodological standards and guidance for comparative clinical effectiveness research, and its members include physicians, academics, and representatives of groups that conduct comparative effectiveness studies.

The health reform law established PCORI as a nonprofit organization to assist patients, clinicians, purchasers, and policy makers in making informed health decisions by carrying out research projects that compare medicines, devices, or methods of delivering care. However, PCORI and comparative effectiveness studies became somewhat controversial during the health reform debate because some critics feared that federal officials might decide to limit coverage for treatments that are shown in studies to be less effective than alternatives. Proponents, meanwhile, argue that PCORI will accelerate the uptake of innovations by being able to rapidly identify which patients will benefit the most from different types of care. Once research priorities are announced, PCORI expects to distribute funding for comparative effectiveness studies in the coming months.