Governor Kenny Guinn

State Of Nevada

Capitol Building
Carson City, NV. 89701
(775) 684-5670
(775) 684-5683 FAX

Or to email him: http://gov.state.nv.us/mailgov.htm

Another fantastic volunteer, Sue Bianchi from California, has created a web site to make advocacy for expanded newborn screening easy for the average person. Please visit this web site http://www.newborn-screening.org. You can click on the icon for "letter writing campaign" and can email a letter to the Governor of your choice.

Advocacy must be continued in Nebraska, (thanks to our NE families and pediatric endocrinologists for all of their efforts so far in NE); Vermont; New Hampshire; Utah; Oklahoma and the District of Columbia. So, check out this web site and let your state leaders know that newborn screening saves babies’ lives.

While Newborn Screening Programs throughout the United States expand their programs, two states – Minnesota and California – face significant worries. The state of Minnesota expanded its NBS program to more than 30 disorders last year. Unfortunately, they've met some serious opposition from a consumer advocacy organization that now threatens to jeopardize the entire program.

Twila Brase, president of the Citizens' Council on Health Care (CCHC) in St. Paul, MN, has raised loud concerns about patient's rights and the risks of personal genetic information stored in state NBS databases. CCHC opposes newborn screening because they believe that the new HIPAA guidelines do not offer adequate privacy protections. She called newborn screening "defect testing of children". Our MN members jumped right in and wrote to their legislators. They were able to thwart the efforts of this group to undermine Minnesota’s newborn screening program. Thanks to all who wrote letters and made phone calls. Again, your advocacy made a difference and protected MN’s program from this threat.

In California, budget cuts are also endangering expanded newborn screening. California has the largest newborn screening program in the nation and accounts for over 500,000 births each year. Through a pilot program, this state has been providing expanded newborn screening for those diseases screenable via tandem mass spectrometry (though it does not screen for CAH) to its infants since last July. If California does not receive continued and permanent funding, they will not be able to provide this screening to its infants and will most certainly prevent the state from adding CAH. This would mean that once again, efforts in newborn screening would take a giant step backwards.

Our members from Michigan are working to improve CAH newborn screening in their state. Michigan has screened for CAH for many years. However, it has the most restrictive laboratory cut-off levels for CAH in the country. Currently, the goal of its newborn screening program with respect to CAH is to detect only salt-wasting male babies. Every other state that screens for CAH sets it cut-offs broadly to detect all cases of classical CAH—males, females and simple-virilizers. The program director has asked for our help to improve the follow-up of CAH babies, and we are more than happy to work with the state to make improvements in follow-up procedures and resources. But, we also want to make sure that the state broadens its lab cut-offs so no classical CAH goes undiagnosed in the newborn period. Member Lynn Schroeder is spearheading the effort there.

Other Legislative Issues (from the Genetic Alliance Newsletter, NORD’s Up and Running in the 108^th Congress… and the March of Dimes’ Advocacy Update):

NIH Funding. Many thanks to our members who wrote letters to their Congressional Representatives to urge them to appropriate generous funding to the National Institutes of Health. For the fiscal year 2003 that began last October 1, the National Institutes of Health will receive $27.16 billion — an increase of $3.79 billion or 16.2% over last year's funding, and the final installment in the agency's five-year budget-doubling campaign. This was a confusing budget year as the President’s proposed budget for fiscal year 2004 was released on February 3^rd, despite the fact that Congress had not completed work on the current’s years’ budget (FY 03). Fiscal Year 2003 funding was finally approved by Congress on February 14 and signed by the President on February 20, 2003. Now we need to begin our work on Congressional support for FY 2004 funding for NIH so that they can continue their exciting research into new clinical treatments and gene therapy for CAH.

HIPAA Privacy Regulations Went into Effect on April 14, 2003! The Privacy Rules portion of the Health Information Portability Assurance Act (HIPAA) is the first major federal law to protect the privacy of peoples’ medical records in this age of information technology. The HIPAA Privacy Rules grant consumers a number of significant new rights, although in less sweeping form than hoped for by most patient advocates. It is critical that health care consumers understand their new health privacy rights and that they know what to do if their rights have been violated.

You can learn more about HIPAA and its importance to your medical care by reading a new brochure, Know Your Rights, that was created by The Health Privacy Project (HPP) at Georgetown University to make HIPAA more useful to the lay public. To access this easy-to-understand outline of our new privacy rights under HIPAA go to http://www.healthprivacy.org/usr_doc/KnowYourRights.pdf. For a more comprehensive posting that covers about 120 pages, including Q&As, and provides a sense of the overall impact of the regulations, go to http://www.hhs.gov/ocr/hipaa/privacy.html.

Consumers Call for Bipartisan Genetic Non-Discrimination Legislation – Mark-up by Senate HELP Committee Delayed. On March 31st, the mark-up on legislation to outlaw discrimination in health insurance and employment on the basis of genetic information was postponed for the fourth time. A new mark-up date has not yet been announced. We have been assured, however, that senior staffers as well as Republican and Democratic members of the Health, Education, Labor and Pensions (HELP) Committee are continuing their attempts to bridge the difficult issues that divide them with respect to privacy and enforcement. Consumer groups – the Genetic Alliance, the Genome Action Coalition, the Coalition for Genetic Fairness and the National Breast Cancer Coalition – have each called for bipartisan negotiations to create a bipartisan bill that has the potential for successful passage on the Senate floor. Keep up to date on genetic non-discrimination legislation by visiting http://www.geneticalliance.org/

Reconstructive Surgery Act of 2003. Inspired by a constituent with a rare congenital disease, Representative Mike Ross (D-AR) reintroduced this legislation. It would require insurance companies that cover surgery to cover medically necessary reconstructive surgeries for congenital defects, developmental abnormalities, trauma, infection, tumors, or disease. The provisions of this bill would cover reconstructive surgery for virilized females with CAH. The bill number is H.R. 1499.

Volunteer Pilot Organization Protection Act. This bill provides liability protection to nonprofit volunteer pilot organizations flying for public benefit and to the pilots and staff of such organizations in order to promote the activities of nonprofit volunteer pilot organizations flying for public benefit and to sustain the availability of these services, including transportation at no cost to financially needy medical patients for medical treatment, evaluation, and diagnosis, as well as other flights of compassion and flights for humanitarian and charitable purposes. The Bill number in the House is H.R. 1084 and in the Senate, S. 955. Volunteer pilots offered their services to transport some of our families to our Baltimore Conference.