URGENT LEGISLATIVE ALERT
WRITE, E-MAIL, CALL AND VISIT YOUR
LEGISLATORS TODAY TO
SECURE UNINTERRUPTED FUNDING FOR SIDS RESEARCH AND SUDDEN INFANT DEATH SCENE PROTOCOLS - PLUS - FULL-COURT PRESS TO INITIATE THIRD FIVE YEAR SIDS RESEARCH PLAN

(Special announcement dated 7/21/98 calling for support for H.R. 4274 -- the Labor, Health and Human Services, and Education Appropriations Bill)

The May 1998 Legislative Alert from the SIDS Alliance follows:
(Internet links courtesy of the SIDS Network)

Dear SIDS Advocate:

Once again, we have the very real opportunity for funding more research aimed at answering the puzzle of SIDS. Your help is needed again to secure full funding for the fifth year of the Second SIDS Five Year Research Plan being supported by the National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH). We also need your help to spearhead a movement to create a third Five Year Research Plan, which will enable federal research initiatives to continue uninterrupted. While both the House and Senate have made a commitment to increase funding for the NIH, the mandate to submit a balanced budget will have legislators looking for programs to cut back. Your letters, calls and visits are critical to our efforts to convince legislators of the importance of increased funding for the NIH and the NICHD.

Over the next several weeks, the U.S. Congress will be considering legislation that provides Fiscal Year 1999 funding for the NIH and the Centers for Disease Control (CDC). In order to continue and expand ongoing projects and initiate much needed new ones, the NICHD has recommended a funding level of at least $16,480,000 for the fifth year of the Five Year Plan.

GOALS OF THE FEDERAL RESEARCH PLANS

Funding from the first Five Year Research plan was primarily utilized to conduct biomedical research that would explore the physical and developmental factors that contribute to SIDS. NICHD supported research has examined the cause of SIDS from the viewpoint of the very diverse fields of infant epidemiology. Research from this past funding initiative has also examined common environmental factors throughout many SIDS episodes, such as stomach and back sleeping, second-hand smoke, and room temperature. During the first year of the Second Five Year SIDS Research Plan, the "Back to Sleep" campaign was initiated to encourage parents to place their healthy newborns on their sides or backs to sleep. This campaign has been a tremendous success, with a 38% decline in SIDS rates since the campaign began! Now, the goal of the NICHD is to reduce SIDS deaths by 50% and increase back sleeping to 95% by the year 2000. In many parts of the country, we are well on the way to realizing this goal; but certain regions and population groups have yet to be reached with this message.

OBJECTIVES FOR FY99: CHILD CARE PROVIDERS AND MINORITY OUTREACH

Several initiatives are planned for the fifth year of the Second Five Year Research Plan. Funds will be used to improve and expand the distribution of the "Back to Sleep" campaign, particularly targeting childcare providers and minorities. NICHD plans to continue to work with the Office of Research on Minority Health to establish community-based centers in areas with a substantial under-represented minority population to develop common biomedical research protocols; and to train minority researchers. If adequate funds are allocated in FY99, NICHD also plans to extend the prospective "Infant Care Practices Study" which is evaluating care-taking practices from birth through one year of age, documenting infant sleep position and other risk factors, correlating factors with socio-demographic characteristics and examining the reasons for and predictors of changes in behaviors.

DEATH SCENE INVESTIGATION PROTOCOLS

Another critical area that requires Congressional encouragement and support is the implementation of standardized death scene investigation protocols created by the Centers for Disease Control and Prevention (CDC). The implementation of these protocols will help differentiate cases of SIDS from cases of child abuse. As you know, the media has often focused its attention on the isolated incidents of abuse being misdiagnosed as SIDS, though it is far more common that families or care givers of SIDS infants are unfairly suspected of being responsible for the death. Quite often, they are arrested and subjected to an unfair and insensitive investigation which can have devastating effects on them, their family and communities. Implementation of a death scene protocol for unexplained infant deaths will decrease the incidence of unfair accusation of grieving parents, as well as uncover any cases of suspicious infant deaths.

Although these protocols have been created, they have only been implemented in a few locations. In order to encourage broader implementation, we would like to see demonstration projects conducted in a variety of urban, rural and suburban areas. These demonstration projects will prove the effectiveness of these protocols to provide greater sensitivity toward the involved parties. Furthermore, they will also increase the epidemiological information available about SIDS deaths and assist in our overall knowledge about SIDS.

There is funding that already exists within the CDC's budget for infant mortality that could be used to create death scene protocol demonstration projects. In addition, the president's budget proposal includes $30 million within CDC's budget to redress health disparities among minorities as part of his President's Initiative on Race. The Initiative on Race proposes to "fund new research/demonstration projects in communities across the country which address six identified areas of health disparities," including infant mortality. The SIDS death scene protocol would be an excellent candidate to receive funding for demonstration projects under the Initiative on Race program.

WHAT YOU CAN DO TO HELP

Historically, Congress has been extremely supportive of SIDS initiatives, thanks to the concern you have expressed as constituents. While progress has been made, there is still a great deal more to do in the fight against SIDS. It would truly be a tragedy if research efforts were halted or delayed at the point when so much progress is being made. Unfortunately, in the current political climate, this is a real possibility.

Please write your two Senators and your Representative and urge them to include at least $16,480,000 in the NICHD's FY99 budget for SIDS research, to consider creating a third Five Year Research plan, and to provide funding for demonstration projects for the CDC Sudden Infant Death Scene Protocol. Enclosed is a list of the Members of the House and Senate Appropriations Subcommittees on Labor, Health and Human Services, Education and Related Agencies, who are responsible for appropriating funds to the CDC, NIH and NICHD. Please write the members from your state as well as the chairmen. Please also send copies to the SIDS Alliance national office, and notify us of any response so that we can follow-up with interested legislators. A sample letter is included for your use.

Furthermore, telephone calls, letters to the editor, telegrams and personal visits to your local or Washington, D.C. Congressional offices are also important and have tremendous impact on legislators. During this election year, legislators and candidates are particularly interested in responding to constituent concerns. Let them know you are concerned about SIDS and want to secure their commitment! For additional information or assistance in arranging a visit, please call the SIDS Alliance's Washington, D.C. office at 202-544-7499.

Each year, Federal legislators are facing the difficult task of allocating scarce resources among a variety of competing initiatives. A concerted effort by the SIDS community is essential if adequate funding for SIDS research is to be realized. Over the past few years, your personal letters have ensured Congress's commitment to fund SIDS research. Please help make a difference again this year.

Sincerely,

Steve Scully
Chairman, SIDS Alliance Public Policy Committee

Members of the LHHS Appropriations Subcommittees

SAMPLE LETTER TO SENATORS AND REPRESENTATIVES

Dear Senator/Representative _____________________;

I am writing to urge that you provide a funding level of at least $16,480,000 for continued research in SIDS related deaths and to support the National Institute of Child Health and Human Development's public health campaign to reduce the risk of SIDS. The $16,480,000 is the total amount needed by the NICHD to fund the fifth year of the Second SIDS Five Year Research Plan. I would also like to ask you to consider implementing a third Five Year Research plan, to continue the excellent work done thus far in SIDS research. Without this funding, critical research efforts will not be completed and there will be no solution to the number one cause of death among infants aged one week to one year. With this funding NICHD can continue its progress to determine the cause(s) of SIDS, and the "Back to Sleep" public health campaign about SIDS risk factors which has already reduced the number of babies that die of SIDS by 38%, and has reduced overall infant mortality. Currently, Sudden Infant Death Syndrome accounts for approximately 3,000-4,000 infant deaths each year.

Additionally, I would like to see the implementation of demonstration projects for the Sudden Infant Death Scene protocol at the Centers for Disease Control and Prevention (CDC). As you most likely know, in 1992, the U.S. Congress recommended that a standard scene investigation protocol for sudden infant deaths be created. As a result, the division of reproductive health of the CDC and the National Institute of Child Health and Human Development of the National Institute of Health along with assistance from outside public health organizations developed such a protocol. There are many benefits to the widespread implementation of the death scene protocol. For example, these protocol will help differentiate legitimate cases of SIDS from cases of child abuse.

Although this protocol has been created, it has only been implemented in a few locations. In order to encourage broader implementation I would like to see demonstration projects conducted in a variety of areas. These demonstration projects will prove the effectiveness of these protocol, increase the epidemiological information available about SIDS deaths, and assist in our overall knowledge about SIDS.

(In this paragraph, please relate your personal experience with SIDS.)

Thank you in advance for your support of SIDS research and public health efforts. Please advise me of your position on this issue.

Sincerely,

Name
Address

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