Hemophilia Federation of America: Friday Update

Friday Update – June 12, 2009

FEDERAL UPDATE:

A victory in the midst

HFA applauds Senate leadership for inclusion of an expert advisory panel for rare diseases in the "Patient-Centered Outcomes Research Act of 2009" (S.1213). Chairmen Max Baucus (Finance Committee) and Kent Conrad (Budget Committee) introduced the comparative effectiveness research (CER) legislation on June 9, 2009. Inclusion of a separate expert advisory panel allows experienced research clinicians, scientists, and patient, consumer and manufacturer representatives to participate in rare disease CER studies.

True to his word: Chairman Kennedy's Healthcare Reform Legislation

Senate Committee on Health, Education, Labor and Pensions (HELP) Chairman Edward Kennedy introduced a 615-page healthcare reform bill Tuesday, June 9th. Even as he recuperates from a rare brain cancer, Chairman Kennedy along with Democratic members and staff continue to work towards their commitment to reform the health care system. The "Affordable Health Choices Act" includes:

• A public-plan option
• Employer Mandates
• Individual Mandates
• Insurance market reforms

Two days following the introduction of his bill, the Senate HELP Committee led by Senator Christopher Dodd, held a roundtable with a total of 24 panelists testifying Thursday and Friday (June 11 &12). General concerns from panelists included:

• Implementation of prevention and wellness plans in legislative proposals
• Employer responsibility and "pay or play" mandates
• Individual mandates and significant subsidies with insurance market reform
• Care coordination and integrated patient care models
• Expansion of public programs such as Medicaid

As the Senate hashes through the details of Chairman Kennedy's legislation, the leadership from three House Committees: Ways and Means, Energy and Commerce, and Education and Labor have released a "Health Reform Draft Proposal" outlining key components of reform legislation. Key components include:

• Community based programs to deliver prevention and wellness service
• Transparent, accountable public health insurance option that offers choice
• Insurance market reform that prohibit rating based on gender, health status and occupation
• Modernization and improvements to Medicare
• Expansion of Medicaid for the most vulnerable low-income populations

A timeline floating around suggests that the three committees will release a draft bill during the week of June 15th, hold hearings in the following two-weeks, markup the bill mid-July and hold floor considerations by the last week of July. For more information about the legislative process, please visit: http://congress.indiana.edu/learn_about/launcher.htm#leg_proc.

Ultimately, the final health care reform package will look different. Costs, financing, structure (public-option, exchange, and co-op), tax credits, tax subsidies, employer and individual mandates and additional considerations are debatable in both chambers, as well as within and between parties. Time will tell whether Congress remains focused on the end goal: ACCESSIBLE, AFFORDABLE, QUALITY HEALTHCARE FOR ALL!

STATE UPDATE:

Utilization (to be of use...)

Utilization has suddenly become an area of increasing curiosity for state Medicaid Administrators. As noted in a previous state update, we are in the midst of the worst economic circumstances since the Great Depression. Political leaders are often tasked with providing as many services as possible, but during times of economic weakness the goal changes. Suddenly, administrators and politicians seek to affect as few as possible, while maintaining essential services for the public. The thought behind this is simple: concentrating the pain, means minimizing voter anger. This makes cutting services to people with bleeding disorders particularly attractive because the bleeding disorders community is relatively small but resource intensive.

Cost containment is a concern throughout the U.S. given the current fiscal environment; two state efforts are particularly concerning with respect to utilization. In Nebraska, the state Medicaid office is moving towards mandating home visits and reviews for any community member ordering more than $50,000 of factor in any one calendar year. This of course raises concerns about who is doing the reviews and what standard they plan to use in doing their review. Maryland has taken its optional infusion log and mandated its completion and return the state Medicaid office. Equally concerning is the state's intention to rely on a decade old document that creates rules for the rate of reimbursement.
These two recent experiences belie the fact that state public health agencies are searching for ways to reduce costs. Community members should be prudent in the following days, weeks and months as the number of cost-cutting practices continue to grow.

HFA remains committed to advocating on behalf of the bleeding disorders community. Please help us continue to represent the community, by sharing your personal story. Contact the HFA Public Policy Team for more information. For additional information on health care reform and legislation, please visit the following links:

http://help.senate.gov/About.html
http://finance.senate.gov/sitepages/Policy%20option%20report.html
http://waysandmeans.house.gov/media/pdf/111/tri.pdf