Spotlighting Epidermolysis Bullosa

Members of Congress are trying to raise the public awareness of epidermolysis bullosa by the creation of a national awareness week. Rep. Tim Bishop (D-N.Y.) and Rep. Peter King (R-N.Y.) introduced a resolution (H. Res. 335) this summer that would create a national awareness week for epidermolysis bullosa in October. The resolution, which encourages groups to promote understanding of the impact of the disease on patients and their families, was introduced in the Senate by Sen. Hillary Clinton (D-N.Y.) and Sen. Chuck Schumer (D-N.Y.). Epidermolysis bullosa affects about 12,500 people in the United States. The resolution also notes that more funding is needed in order to conduct research and to develop treatments for the disease.

Psoriasis Awareness Increases

Psoriasis advocates are also celebrating increased awareness on Capitol Hill. As the National Psoriasis Foundation was ramping up awareness activities last month, the U.S. Senate passed a resolution officially designating August 2005 as "Psoriasis Awareness Month" and acknowledging the large physical and financial toll created by the disease. "Awareness is a powerful force against the painful misconceptions that surround many medical problems," Sen. Gordon Smith (R-Ore.), one of the sponsors of the Senate resolution, said in a statement. "To the extent that we can increase the common understanding of this chronic disease, we can improve patients' lives." The National Psoriasis Foundation last month also launched its first-ever Local Lobby Week, in which volunteers from across the country visited their members of Congress in order to talk about psoriasis and how the disease affects their daily lives. The foundation continues to push for increased federal funding for psoriasis research and for the enactment of the Arthritis Prevention, Control, and Cure Act of 2005 (S. 424/H.R. 583).

Bill Would Repeal SGR

Physician groups are hailing the fact that a forthcoming bill from Rep. Nancy Johnson (R-Conn.), chair of the House Ways and Means Subcommittee on Health, would repeal Medicare's current sustainable growth rate and base future updates for physician payments on the Medicare Economic Index. At a recent hearing, Mark McClellan, M.D., administrator for the federal Centers for Medicare and Medicaid Services, informed Rep. Johnson that such a measure could come at a high cost: specifically, that the Medicare Economic Index-based increases would be $183 billion over 10 years. Rep. Johnson's bill seeks to establish a performance measurement and reporting system. C. Anderson Hedberg, M.D., president of the American College of Physicians, testified that Rep. Johnson's bill should provide funding to support quality improvement, so that all physicians would receive a positive update linked to inflation with the opportunity to receive additional reimbursement for their participating in performance measurement.

Wisconsin Loses Cap on Damages

The Wisconsin Supreme Court's decision to remove a 30-year-old cap on noneconomic damages in malpractice cases opens the door for a medical liability crisis, the American Medical Association said. The court held that the cap, currently set at $445,775, was "unconstitutional beyond a reasonable doubt." The decision will endanger Wisconsin's stable health care environment, AMA Trustee Cyril M. Hetsko, M.D., said in a statement. Wisconsin medical groups are concerned that the decision "will force a wave of doctors to retire early or stop performing high-risk procedures," such as delivering babies in rural areas, said Susan Turney, M.D., chief executive officer of the Wisconsin Medical Society.

IT Deficit Noted Among Physicians

Most Medicare fee-for-service outpatient visits in 2001 were made to physicians with limited information technology support for patient care, the Center for Studying Health System Change (HSC) reported. Linking Medicare claims data to HSC's national physician survey, researchers found that a total of 57% of Medicare outpatient visits were made to physicians in practices that used IT for no more than one of the following five clinical functions: obtaining treatment guidelines, exchanging clinical data with other physicians, accessing patient notes, generating preventive treatment reminders for the physician's use, and for writing prescriptions. While half of those patient visits were to physicians using information technology in order to obtain treatment guidelines, the proportion of visits to physicians in practices with IT support for other patient care functions was much lower. Rates for electronic prescribing fell to 9%. While access to "wired" practices was found to be low for all beneficiaries, HSC determined that there were few differences in access between sicker and healthier beneficiaries.

Disability Call to Action Debuts

The U.S. Surgeon General has issued his first-ever Call to Action on disability. The new report outlines a series of goals that are aimed at helping individuals who have disabilities to receive better health care. The overall goals include providing health care professionals with the tools needed to screen, diagnose, and treat the whole person with a disability with dignity; helping those persons with disabilities to maintain healthy lifestyles; and also increasing accessible health care and various support services for people with disabilities. "The reality is that for too long we provided lesser care to people with disabilities," Surgeon General Richard H. Carmona, M.D., said in a statement. "Today, we must redouble our efforts so that people with disabilities achieve full access to disease prevention and health promotion services." The full text of the "Surgeon General's Call to Action to Improve the Health and Wellness of Persons with Disabilities" is available at

www.surgeongeneral.gov

Policy & Practice