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BearNet News Fall 2009

Congress Continues to Make Progress on Health Care Reform

This year, two committees in the U.S. Senate and three committees in the House of Representatives have offered various proposals for health care reform. The Senate Finance Committee was the last of the five committees to approve its legislation on October 13, 2009. This bill will serve as the foundation for the final bill in the Senate and it is currently being merged with legislation passed earlier this year by the Senate Health, Education, Labor and Pensions (HELP) Committee. The House is also reconciling its three versions of health reform legislation in order to produce its final bill.

A major distinction between the two Senate bills is that the HELP Committee bill includes a public or government-sponsored insurance option, whereas the Finance Committee's does not. The bills do, however, have many similarities. Both bills would require individuals to obtain health insurance and impose penalties for failing to do so. They also would require significant insurance market reforms, including barring insurers from excluding individuals based on pre-existing conditions. Both bills also establish new state-based insurance markets for individuals and businesses to shop for coverage, referred to as "gateways" in the HELP bill and "exchanges" in the Finance bill.

Following approval of the Senate Finance Committee's bill, Senate Majority Leader Harry Reid (D-NV) met with Senate Democrats in an effort to reconcile the party's varying opinions on what the final legislation should include. Key players in these negotiations are Senate Finance Committee Chairman Max Baucus (D-MT) and Senator Chris Dodd (D-CT), who presided over the HELP Committee in the absence of the late Senator Ted Kennedy (D-MA). White House officials, including Chief of Staff Rahm Emanuel, are also said to be in close consultation.

Senator Reid and the Democratic leadership face a very difficult challenge: to produce a merged bill that will be amenable to both liberals and moderates in the Democratic caucus. Sixty votes are needed to pass the bill. The most contentious issues continue to be whether to include a government-run insurance option and how to pay for the overhaul. Senator Baucus continues to underscore that he does not believe the bill will garner the 60 votes needed for passage if a government-run insurance option is included.

In the absence of 60 votes, Senate rules provide the option of utilizing a parliamentary procedure called "budget reconciliation," which requires only a simple majority of 51 votes to pass legislation. Using reconciliation is a risky proposition because non-budgetary items could be ruled out of order, resulting in a weaker bill; it limits floor debate to 20 hours; and it would close the door to any possibility of producing a bipartisan bill.

On October 29, 2009, Democrats in the House of Representatives released their health care reform legislation. The $894 billion proposal would broadly expand Medicaid, create a new government-run health insurance plan and offer subsidies to moderate-income Americans in order to provide health insurance to nearly 36 million people. It is estimated that this legislation will provide health insurance for 96 percent of all Americans over the next 10 years.

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Key Issues for Children in Health Reform

Coverage: A last-minute amendment to the Senate Finance Committee bill that could undermine substantive health reform for children was offered by Senator Jay Rockefeller (D-WV) and adopted by the committee by a vote of 13-9.

The bill originally proposed moving children covered under the Children's Health Insurance Program (CHIP) and Medicaid expansions into the exchange with a guarantee of Early and Periodic Screening, Diagnostic and Treatment (EPSDT) benefit coverage - a significant improvement over current CHIP benefits. The Rockefeller amendment instead preserves CHIP, does not guarantee its reauthorization beyond 2013 and removes the EPSDT benefit for the CHIP population. This backtrack, coupled with the Committee's failure to address the disparity in reimbursement between Medicaid and Medicare, could make coverage and access to health care an ongoing challenge for millions of children.

Access: Health insurance coverage is a critical component of ensuring access to care, but it is by no means a guarantee that children will receive the right care at the right time and in the right setting. Low Medicaid reimbursement, which for children's hospitals on average covers only 67 percent of the cost of care, often forces pediatric providers to limit the number of Medicaid beneficiaries they will see. Unable to receive timely preventive care in a physician office setting, families often turn to the emergency department - a significantly more expensive health care setting. For this reason inadequate Medicaid reimbursement rates significantly impact children's access to care.

Children's National Medical Center and children's hospitals across the country are urging Congress to address Medicaid reimbursement rates in comprehensive health reform. The House bill includes a provision to increase Medicaid physicians' rates for primary care to 100 percent of Medicare. This provision does not address the largest problem for children: access to pediatric specialists. To ensure access, all pediatric providers, specifically pediatric specialists, should be reimbursed at a level at least equal to Medicare. This investment would ensure children have access to care that will reduce costs associated with long-term health problems.

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New Surgery Institute at Children's National Medical Center Aims to Improve Surgery and Eliminate Pain

On September 16, 2009, Children's National Medical Center announced that it will create a new Institute for Pediatric Surgical Innovation made possible by a $150 million gift from the Government of Abu Dhabi. 

The institute, known as the Sheikh Zayed Institute for Pediatric Surgical Innovation, will focus on four key areas: pain medicine to alleviate and eventually eliminate pain; immunology or the use of a child's own immune system to fight illness and cure disease without the need for surgery; bioengineering to harness the full power of science and technology to make treatment as precise as it can possibly be; and personalized medicine to tailor treatment for every child depending on their own unique genetic makeup.

Kurt Newman, MD, senior vice president of the Joseph E. Robert, Jr., Center for Surgical Care at Children's National, said, "The creation of the Sheikh Zayed Institute for Pediatric Surgical Innovation represents an incredible investment in knowledge and ideas that will lead to life-saving discoveries. Our plan is to make surgery more precise, less painful, and less invasive."

During the announcement of the extraordinary donation, His Excellency Dr. Ahmed Mubarak Al Mazrouei, chairman of the Health Authority-Abu Dhabi commented, "Through the generosity of His Highness Sheikh Khalifa bin Zayed Al Nahyan, the people of Abu Dhabi are honored to support the vision of Children's National Medical Center to improve children's lives. We share a commitment to alleviating suffering and curing disease for children throughout the world. We look forward to the outcomes of the center's work in the years ahead, and the positive impact on health care delivery for children."

Also in attendance, his Excellency Ambassador Yousef Al Otaiba, UAE Ambassador to the United States said, "We know illness and disease know no boundaries or borders. Medical advances require cooperation, partnership, resources, and determination. This new institute will bring together the best minds in the field of pediatric surgery, pain management, and medical research all with a singular focus to initiate breakthroughs and find solutions."

Philanthropist Joseph E. Robert, Jr., spoke as both a parent of a Children's National patient and as a longtime supporter. Robert helped fund the existing surgical center at Children's National  and is the founder and chairman of Fight For Children, a Washington-based organization that has supported the medical center's research and care. 

Robert's son Joe III underwent a nine-and-a-half-hour-long surgery at Children's National 10 years ago, and went on to serve in the Marines. Robert said, "He was released a week later, but it was traumatic not just for him, but also for his mother and me. The institute is going to dramatically reduce the trauma that children and their parents are going to have to experience. It's going to change all that fear and anxiety and improve children's lives before, during, and after surgery."

The gift was made in honor of the late Sheikh Zayed bin Sultan Al Nahyan, founder of the United Arab Emirates and president from 1971 until his death in 2004.

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Children's Muscular Dystrophy Work Highlighted in Parade Magazine

On August 30, 2009, Children's National Medical Center researcher Eric Hoffman, PhD, director of the Center for Genetic Medicine Research, was featured on the cover of Parade Magazine in conjunction with an article that addressed recent breakthroughs in research for Duchenne muscular dystrophy (DMD).

Duchenne muscular dystrophy is the world's most common genetic killer of children. The most common of all of the muscular dystrophies, it is found among all of the world's populations, races and cultures with the same incidence. It is even found among many animal species. Every 1 in 3,000 males are born with DMD which is caused when the dystrophin gene is absent or malfunctioning. One-third of all cases involve inherited genetic malformations; and two-thirds of all cases are due to spontaneous genetic mutations. That means that this disease will always exist in the absence of therapeutic interventions.

Dr. Hoffman, was an original member of the team of scientists that discovered dystrophin in 1986. Since then, Dr. Hoffman has devoted his work to finding a therapeutic approach that can cure DMD.

In the past few years, due to federal and philanthropic investments in DMD research, Dr. Hoffman's team at Children's National have successfully tested a therapeutic treatment for DMD in a large animal model. Genetic researchers at Children's National  and the National Center of Neurology and Psychiatry in Tokyo published the results of the first successful application of "multiple exon-skipping" to curb the devastating effects of DMD in an animal larger than a mouse. Multiple exon-skipping employs multiple DNA-like molecules as a "DNA band-aid" to skip over the parts of the mutated gene that block the effective creation of proteins.

The study, conducted in Japan and the United States, published this past spring in the peer-reviewed journal of the American Neurological Association, the Annals of Neurology, treated dogs with naturally occurring canine X-linked muscular dystrophy, which is very similar to DMD found in humans.

"This trial makes the much-talked about promise of exon-skipping as a systemic treatment for Duchenne muscular dystrophy in humans a real possibility in the near term," said Toshifumi Yokota, PhD, lead author of the study. "Of course this success has also introduced even more avenues for investigation, but these findings finally overcome a significant hurdle to our progress - we've solved the riddle of an effective system-wide delivery to muscle tissue, and seen promising results."

"This study delivers the proof-of-concept that systemic anti-sense therapy can be done in a large organism, in Duchenne muscular dystrophy or any disease," says Dr. Hoffman.

The authors note that significant steps still remain. Successful systemic treatment with morpholinos requires large doses of the antisense molecules - and the technology is costly and difficult to obtain. Additionally, treatment in this study showed diminished success at curbing muscle deterioration of the heart, meaning that a more effective and specific delivery system is needed to rescue the organ's delicate tissue in Duchenne muscular dystrophy patients. However, these early successes  show much promise for the oft-discussed exon-skipping method as an effective treatment for Duchenne muscular dystrophy and some other genetic disorders.

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Study Highlights Ongoing Pediatric Health Care Needs in the Nation's Capital

Children's National Medical Center recently released its first Pediatric Health Needs Assessment, a comprehensive assessment of health status and health care services for the more than 100,000 youth (ages 0-17) residing in Washington, DC. The report, Health and Health Care among District of Columbia Youth, demonstrates that gaps in care and services persist for children in the District despite high levels of health coverage. The study findings point to the need for broadly inclusive partnerships across agencies, providers, and the government to address serious and unmet pediatric health care needs.

The assessment, which was conducted by the RAND Corporation, found that the District of Columbia leads the nation in children with health coverage, with only an estimated 3.5 percent uninsured children in Washington, DC, in 2007 versus 9.1 percent uninsured nationally. However, although nearly 97 percent of children in the District have health insurance coverage, that coverage does not translate to access to care.

Consequently, many children rely on emergency rooms and are hospitalized for conditions that could be prevented. Some health issues in the District are particularly alarming, including the highest or among the highest rates in the nation of obesity, asthma, sickle cell disease, HIV/AIDS, adolescent pregnancy, and teen dating violence.

"Many of the study findings are confirmatory and overall provide valid quantitative and qualitative evidence in support of a data-driven approach to public health action," said Joseph L. Wright, MD, MPH, senior vice president of the Child Health Advocacy Institute at Children's National. "We look forward to using this information to work collaboratively with other stakeholders to improve the health and health status for children in the District of Columbia on a community-wide basis."

The study will inform Children's National's programming and community benefit work, and will be shared broadly throughout the region to foster strategic partnerships among policy makers, government agencies, schools, faith-based organizations, insurance companies, and business entities all in the name of addressing children's health.

"The RAND Corporation has produced an unprecedented review of pediatric-specific issues in the District," said Jacqueline D. Bowens, executive vice president and chief government and external affairs officer, Children's National Medical Center. "Children's National serves a unique role in the District as the largest single provider of pediatric care as well as the largest employer of specialty and primary care pediatricians. In this era of health reform, it is important to remember that health care is not a one size fits all proposition. Health care reform must take into account the unique needs of children and their providers and recognize that coverage doesn't guarantee access to care. We must address Medicaid payments for pediatric providers, workforce shortages in pediatric specialties and nursing, medical malpractice reform, and the barriers to care that these challenges create. By addressing these and the other findings in the report, we will ensure that all children have access to the right care at the right time and in the right setting."

Commissioned by Children's National and conducted by RAND, the report is the first of its kind done in the metropolitan area. The report's methodology is based on a unique blend of quantitative and qualitative data sources that provide a nuanced and previously unavailable picture of the health status of children in the District.

"Children's National is already partnering with organizations across the District, and provides a great deal of community-based public health work through its research and advocacy institutes, its community clinics, mobile vans, networks of pediatricians, and partnerships with multiple health government agencies," said David Catania, at-large, District of Columbia city councilmember, who chairs the Council's Committee on Health. "This report shines a light on important work that remains to be done and helps all of us better direct our resources to serve the children of the District. We applaud Children's National for commissioning this study that is already shaping community action.

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