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BearNet News - Winter 2009

Historic Election Brings Change

On November 4, 2008, America elected Senator Barack Obama (D-Ill.) as its 44th President. Obama attained 364 electoral votes and 65 million popular votes, beating Sen. John McCain’s (R-Ariz.) 59 million popular votes. President-elect Obama was sworn into office January 20, 2009.

In the U.S. Senate, Democrats increased their majority by six seats to 56 with victories in Colorado, New Hampshire, New Mexico, North Carolina, Oregon, and Virginia. Two Independent senators caucus with the Democrats, Senators Joe Lieberman (I-Conn.) and Senator Bernard Sanders (I-Vt.), which effectively increases the Democratic majority to 58 seats. The Minnesota Senate race between incumbent Norm Coleman (R) and challenger Al Franken (D) remains in legal limbo as a statewide recount is conducted. Even if Franken emerges as the victor, Democrats will not have the filibuster-proof 60-member majority they had hoped for, but it’s still a more dominant position of Senate control. The Senate has not had a filibuster-proof majority since 1977.

In the House of Representatives, Democrats also increased their majority by winning 18 additional seats bringing their total to 254 seats over the Republicans’ 173. The regional Congressional delegations remained relatively stable with some notable exceptions. In Virginia, Democrats took control of the state’s congressional delegation for the first time in nearly a decade by defeating Republican representatives Thelma Drake and Virgil Goode, and claiming the seat of retiring Representative Tom Davis. In the Senate, former governor Mark Warner (D) defeated former governor Jim Gilmore (R) to fill the seat of retiring Sen. John Warner (R).

In Maryland, Democrats gained a seat and now control seven of the state’s eight Congressional districts. Democrat Frank Kratovil defeated Republican Andy Harris to win a seat that has been held by the GOP for 18 years in Maryland's 1st Congressional District. Harris defeated incumbent Wayne Gilchrest (R) in the spring primary.

The election of 2008 puts both chambers of congress and the presidency squarely under Democratic control for at least the next two years. Important issues that will likely dominate the new government’s agenda early in 2009 are reauthorization of the State Children’s Health Insurance Program (SCHIP), as well as health care reform. Children’s National is a strong proponent of SCHIP reauthorization and will closely monitor healthcare reform proposals to ensure children’s unique needs are addressed.

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President Signs Muscular Dystrophy CARE Act

On October 8, 2008, President George W. Bush signed into law H.R. 5265, the "Paul D. Wellstone Muscular Dystrophy Community Assistance, Research and Education Amendments Act" (MD CARE Act). This legislation, which builds on the success of previous legislation enacted in 2001, will continue to fund important muscular dystrophy research and improve patient care for people living with muscular dystrophy.

U.S. Sen. Roger Wicker (R-Miss.), who as a Member of the House of Representatives authored the original legislation in 2001, applauded the reauthorization. "This is a great achievement for the U.S. Congress and an even greater achievement for the thousands of boys across the country with Duchenne [muscular dystrophy]," Wicker said.

Duchenne muscular dystrophy is the most common fatal genetic childhood disorder. It affects one in every 3,500 boys born in America and causes a progressive loss of muscle strength. It ultimately affects the heart and lungs, typically leading to death in the late teens or early twenties.

Another leading champion of the legislation, Sen. Johnny Isakson (R-Ga.), said, "I’m extremely pleased the Congress has passed this legislation. It is my hope that this legislation will help researchers develop a better understanding of this disease, leading to improved treatments and real hope for the many families affected by muscular dystrophy."

The 2001 legislation was the only "disease-specific" legislation that President Bush signed into law. It directed the National Institutes of Health (NIH) to establish six centers of excellence, one of which is headed by Children’s National, as well as a Muscular Dystrophy Coordinating Committee to ensure collaboration of efforts. It directed the Centers for Disease Control and Prevention to expand data collection on muscular dystrophy.

This newly enacted reauthorization expands upon the 2001 bill by continuing to support the NIH muscular dystrophy research centers of excellence and expanding the number of NIH institutes involved to include the National Heart, Lung, and Blood Institute. It also officially names the centers of excellence the Paul D. Wellstone Muscular Dystrophy Cooperative Research Centers and encourages enhanced clinical and translational research infrastructure. Finally, it ensures MD STARnet data is regularly updated to reflect patients’ changing conditions, as well as encourages the U.S. Department of Health and Human Services to develop standards of care for Duchenne muscular dystrophy.

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SCHIP Reauthorization

The 111th Congress wasted little time in addressing reauthorization of the State Children’s Health Insurance program. After passage in the House of Representatives on January 29, 2009, and Senate passage shortly thereafter, President Obama signed a reauthorized and expanded version of the SCHIP program into law on February 4, 2009. The expanded program passed in the Senate by a vote of 66-32, with 9 Republicans joining Democrats to support the bill. The expanded program will provide insurance to an additional four million children in addition to the seven million children presently covered under the program.

Previously, SCHIP provided health coverage to approximately 7 million children in the United States, and was in danger of expiring in March 2009. Last year, Congress was successful in extending the program until March 2009, but only after enduring two presidential vetoes and limiting its initial plan to expand the program’s coverage to four million additional children. Prior to the program's expansion, SCHIP provided $1.4 billion to allow states to maintain current enrollment without experiencing budget shortfalls. This year, Children’s National’s BearNet members sent more than 350 messages to Congress urging reauthorization.

Pursuant to passage in the House of Representatives, on Thursday, January 29, 2009, the Senate passed the expanded SCHIP bill and it is expected that President Obama will soon sign it into law. The expanded program passed by a vote of 66-32, with 9 Republicans joining Democrats to support the bill. The expanded program will provide insurance to an additional four million children in addition to the seven million children presently covered under the program.

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Health Care Reform

On November 20, 2008, Children’s National President and Chief Executive Officer Edwin K. Zechman, Jr., participated in a national conversation on healthcare reform at the National Press Club in Washington, DC. The conversation, entitled "Proposals to Policy," was hosted by the National Association of Children’s Hospitals (N.A.C.H.). Mr. Zechman is the current chairman of the association’s Board of Trustees. Discussing the issue of healthcare reform with Mr. Zechman were a number of esteemed panelists, including U.S. Rep. Michael C. Burgess, MD (R-Texas) and U.S. Sen. Ron Wyden (D-Ore.).

Healthcare reform is another important issue expected to be addressed early on in the 111th Congress and the Obama administration. Presently, only 60 percent of children have private health insurance coverage. While 28 percent have public coverage through Medicaid and SCHIP, the remaining 12 percent are uninsured. Because Medicaid reimburses pediatricians at only 69 percent of the rate paid under Medicare, health care reform is of particular importance to Children’s National and other pediatric hospitals.

Recently, the N.A.C.H. adopted a set of principles for children's health coverage to guide the healthcare reform debate. These principles are based on discussions with the leadership of children's hospitals as well as a number of health policy experts and advocates. The nine principles articulate the elements necessary to make health care reform work for children. Facts, stories and expert opinions substantiate these principles and demonstrate the need for reform of the current state of children's health coverage. The principles will help guide the association’s work in 2009 when Congress and the new administration are expected to address health reform.

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Important Dates for Congress, Maryland and Virginia

  • January 6, 2009 – 111th Congress Convenes
  • January 7, 2009 – DC Council Convenes
  • January 14, 2009 – Maryland and Virginia General Assemblies Convene
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Pediatric Palliative Care Bill

In September 2008, Representative Jim Moran (D-Va.) introduced legislation entitled "Children’s Program of All-inclusive Coordinated Care Act of 2008" or ChiPACC. This legislation would provide health care under Medicaid for children with life-threatening illnesses.

The U.S. Government Accounting Office estimates that, of the approximately 72 million children in the United States, an estimated 10 million children currently live with a serious chronic condition. Current models of care for seriously ill children through end-of-life care, including hospice/palliative care programs, are neither sufficient, nor sufficiently available to adequately address the needs of children with life-threatening conditions and their families.

Hospice programs generally must limit their populations to individuals within six months of death who have elected to forego curative care. However, healthcare providers often cannot state with any level of certainty that a child is within six months of death. Families of children with life-threatening conditions must cease curative care in order receive end-of-life palliative care according to current hospice/palliative care models.

Congressman Moran’s legislation is intended to give states the option of providing continuous care in the home in order to avoid the more expensive and disruptive emergency room visits for seriously ill children. The ChiPACC would provide each enrolled child an individualized treatment plan that includes and manages services from providers across the health care spectrum. These services would seek to improve upon the often inconsistent care currently available to more than one million seriously ill children under Medicaid.

It is expected that Congressman Moran will reintroduce this legislation in the 111th Congress.

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