Last fall, the Senate approved the Genetic Information Nondiscrimination Act of 2003 (S1053) unanimously. The bill would provide a basic level of protection against genetic discrimination in health insurance and in the workplace. President Bush supports the legislation. While more than half of the Members of the House of Representatives have cosponsored similar legislation, action has stalled.

We need your help. The House must act soon to approve a basic level of genetic nondiscrimination protections. Your voice could make the difference. Please contact your Representative to urge him/her to support passage now of genetic nondiscrimination legislation.

In January, President Bush proposed a budget for the National Institutes of Health that was only 2.6% above last year’s level. Since inflation in the field of biomedical research is expected to exceed 4%, the request, if adopted by Congress, would mean that less research could be supported in the coming fiscal year than is being conducted during the current year.

Both houses of Congress have passed budget resolutions that will force significant cuts in domestic programs from the amounts requested by the President. The House is almost $1.6 billion below the President’s request for domestic spending and the Senate Resolution is $2.3 billion below that of the House.

The Conference Committee that will resolve the difference between these two bills is continuing to meet, but there is little hope that they will produce a resolution that would allow spending for domestic programs to reach even the levels requested by the President. Please contact your Senator and Representatives to express your opposition to the Conference Committee Report. It is also imperative that you speak out in your community, visit with your colleagues and talk to the various patient advocate organizations who share our concern about domestic spending priorities. We are at a critical point in the federal budget process and we have one more chance to make our voices heard.

The Federation of American Societies for Experimental Biology website has a tool to fill in the blanks and generate email or hard copy letters to your legislators on Genetic Discrimination and on the Budget Conference for NIH Funding. Please visit the web site at http://capwiz.com/faseb/issues/?style=D& and spend five minutes making a difference. It couldn’t be easier!

On Thursday, May 6, the Senate passed the Family Opportunity Act sponsored by Senator Chuck Grassley. It now goes to the House for consideration. The companion House bill, HR 1811, sponsored by Rep. Pete Sessions (R-TX), faces an uncertain future. The cost of the bill is estimated to be $7 billion over 10 years and is "likely to face opposition from fiscal conservatives" (CQ Today, May 6). According to the Kaiser Daily Health Policy Report, Grassley plans talks with House leadership in the hopes of moving the bill to the House floor for a vote. Major provisions of the legislation include: 

This legislation could benefit many of our members and allow them access to quality healthcare for their children. Please take the time to write your Congressional representatives about this legislation as well. You can find your Representative at www.house.gov .

Our members have bombarded the Governor’s office with hot pink postcards!!! Over 10,000 postcards have been sent to Governor Arnold Schwarzenegger urging him to expand California’s newborn screening program to include CAH and other disorders. While in the CA State House in March, I stopped in to the Governor’s mailroom and asked whether they had been receiving any pink postcards. The mailroom manager, said "Oh yeah. CARES Foundation. They come in every day".

In addition, our members have visited the State House and spoken to legislators, as well as phoned and written and visited with their aides in their district offices. In March, members attended a symposium hosted by the Public Health Institute at which I spoke on grassroots activism in newborn screening, and members told their stories to the attendees. Alyssa Ackenheil, age 10 of Sacramento, CA, bravely got up before the audience and spoke about her life with CAH and how she never wanted to see another baby with CAH suffer or die. She made a tremendous impact on the group and on Senator Dede Alpert of San Diego.

At the close of the symposium after hearing Alyssa and all of the parents’ poignant stories, Senator Alpert agreed to introduce legislation dramatically expanding CA’s newborn screening program and said she would work vigorously to get it passed quickly. She has been good to her word. Last month, the bill, SB142 passed through the Senate and is now moving through the Assembly. Moreover, the bill has been attached to the 2005 Budget and cannot be line-item vetoed if the Governor approves the budget (which he will). The legislation is now moving on 2 parallel paths at an amazing speed. All of our efforts this past year or so primed the legislature for and made them very receptive to this expansion. Many thanks to everyone who has helped so far. We need to keep up the effort. Please call the office or email us for more postcards.

Oklahoma expected to begin newborn screening for CAH, cystic fibrosis, and MCAD on July 1, 2004. Unfortunately, they are delayed due to construction of a new lab. They now expect to begin in January 2005.

The State is working on an expansion plan that will include CAH. However, it may be some time before the expansion is approved and implemented.

If you are interested in spearheading an effort in your state to expand newborn screening, please call the office and talk to Kelly Leight, 1-866-227-3737.