The "Discovery" of Sudden Infant Death Syndrome: Lessons in the Practice of Political Medicine

By Abraham B. Bergman | Go to book overview

APPENDIX VII

July 10, 1974

TO: Eileen G. Hasselmeyer, Ph.D. Program Director, Perinatal Biology and Infant Mortality Branch NICHD

FROM: Abraham B. Bergman, M.D. President, National Foundation for Sudden Infant Death

SUBJECT: Thoughts on implementation of PL93-270, the Sudden Infant Death Syndrome Act of 1974


Background of legislation

There are two aspects to the problem of sudden infant death syndrome (SIDS). The first is discovering the cause and possible prevention through biomedical research. Other than language encouraging an increased effort and reports to Congress on progress in research, PL93-270 does not deal with research. The sponsors of the legislation felt that adequate authority already exists through NIMH mechanisms and that specific authorizations for SIDS research would not be particularly helpful.

The law does address itself to the "human" aspect of the problem, the tragic grief and guilt reactions experienced by surviving family members. Because of mystery and mishandling of SIDS, the surviving family members tend to suffer greatly. The legislation was prepared in response to an NICHD sponsored study, "The Management of SIDS in the United States-1972." This was performed by me in 1972 and presented to the Congressional committees during testimony on the legislation. The underlying assumption is that all communities in the United States should have a standardized procedure for the handling of cases of sudden unexpected infant death. This can most practically be done by establishing "regional centers" where autopsies could be performed, and parents provided with information and counseling about SIDS. The law thus provides for education of personnel on proper management of SIDS and services to families who lose children to SIDS.


Current Status of HEW Activities in SIDS

NICHD has been the lead agency in that they support biomedical research. Their research program will not be effected by the new law other than the necessity of filing regular reports with Congress. Other agencies with interest are NIMH, Maternal and Child Health Services, and the National Center for Health Statistics.

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The "Discovery" of Sudden Infant Death Syndrome: Lessons in the Practice of Political Medicine
Table of contents

Table of contents

  • Title Page iii
  • Foreword v
  • Preface vii
  • Contents ix
  • List of Appendixes x
  • Introduction xi
  • 1 1
  • 2 - What is Sids? 8
  • 3 - Disturbing the Peace 18
  • 4 - The Battle Plan 29
  • 5 - The Power of Warren Magnuson 41
  • 6 - Sensitizing Professionals 50
  • 7 - The Mondale Hearings 57
  • 8 - Campaigning on the Local Level 68
  • 9 - Our Nader Report"" 81
  • 10 - The Satisficers 93
  • 11 - House Hearings 101
  • 12 - Senate Hearings: Second Round 107
  • 13 117
  • 14 - Implementation: Pushing on a Rope 124
  • 15 - Keeping the Foundation Afloat 136
  • 16 - Collaborating with Nimh 146
  • 17 - A Dual System for Helping Families 152
  • 18 - The Mobilization Contract 163
  • 19 - Calling the Cops 172
  • Epilogue 184
  • Glossary of Names 197
  • Appendix I 203
  • Appendix II 206
  • Appendix III 209
  • Appendix VI 211
  • Appendix V 214
  • Appendix VI 216
  • Appendix VII 218
  • Appendix VIII 221
  • Index 233
  • About the Author 239
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