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Tips for Advocating for Newborn Screening Expansion and Enhancements

"Never doubt that a small group of dedicated people can change the world.  Indeed, it is the only thing that ever has." 
- Margaret Mead

Many people write wanting to advocate for newborn screening.  We have put together this guide sheet in hopes that it will help “guide the way” in making you the best newborn screening advocate you can be.

What You're Fighting For
Expansion is screening for more disorders.  Enhancements are anything that better the current system such as use of courier or overnight services to deliver specimens to the NBS laboratory (for faster results), better follow-up care, and better screening methodologies for disorders that are currently screened for.

Advocating Tips

1.      Join the Save Babies Through Screening’s mailing lists.  SBTS offers a snail mail list, and three separate online list serves, including an announcement list, discussion list and Eye on NBS list.  The discussion & Eye on NBS list serve talk about NBS related topics and the sharing of ideas on advocating.  (The Eye on NBS list serve is open to official SBTS state monitors only.)

2.     Call your state department of public health to find the names and contact information of your newborn screening program officials.  Specifically you'll want to get the names and contact information of:

• Director/Commissioner of Human Resources

• Director/Commissioner of Public Health  

• Director/Coordinator of the Newborn Screening Program  

• President for the State Chapter of the American Academy of Pediatrics  

• President for the State Chapter of the March of Dimes

• Chairperson for the State Chapter of the Healthy Mothers Healthy Babies Coalition

• Members of the State Newborn Screening Advisory Committee (NBSAC)

3.      Learn all that you can about your state’s newborn screening program.  It is very important to be knowledgeable about your state's NBS program.  If your state has a NBS website, you can find most of it there.  If your state does not have a NBS website, then you may find some information on NBS on the state department of health website, or you may need to call the newborn screening director/coordinator.  If you need to call your NBS director/coordinator, write out a list of questions you want to know prior to the call.  You can find out the answers to some of this information under the What Does Your State Screen For page.

You will need to know the following:

• What disorders your state screens for. (What’s on its NBS panel).

• Whether your state charges for the tests or whether it is paid for fully by the state.

• Whether your state is considering adding or deleting disorders in the NBS panel.  

  • What disorders are they thinking of adding to the NBS panel?  

  • What disorders are they thinking of deleting from the NBS Panel, (not screening for anymore)?  

• Whether your state has a Newborn Screening Advisory Committee.  

  • Who is on the committee?  

  • Are any parents or “consumers” members of the committee?  

4.     Compile a list of hospitals in your state and the key contact person for each.  You can probably find this information on the Internet.  Encouraging hospitals to offer supplemental screening to all its patients can be the most successful and fastest way to get expanded screening done.  Use leverage with the neonatal and legal staffs, to have them begin offering supplemental newborn screening.  Click here for a sample letter to hospitals.

5.      Write letters, email and make phone calls to the targeted people.

6.      Prepare some documentation to go along with your letters, such as copies of media and medical society articles.  It is usually better not to supply them with too much material at once; when faced with too much information they may not read it all.  Instead pick out a few items to include along with your letter, then each time you write them send along more (different) information.  With each letter, you may want to address certain issues from different aspects, and always supply material that illustrates your point.  

Some materials to that you might like to provide are:

• Parenting Magazine, The Price of Life, August 2000

• US News and World Report, Little used newborn test can prevent real heartache, February 2000

• Retrospective biochemical screening of fatty acid oxidation disorders in postmortem livers of 418 cases of sudden death in the first year of life
  The Journal of Pediatrics; January 2001; Volume 132, Number 6 (June 1998)
  Electrospray Tandem Mass Spectrometry for Analysis of Acylcarnitines in Dried Postmortem Blood Specimens Collected at Autopsy from Infants with Unexplained Cause of Death
  Clinical Chemistry; June 2001

• Diagnosis of Very Long Chain Acyl-Dehydrogenase Deficiency From an Infant's Newborn Screening Card
  Pediatrics; July 2001 issue
  American Academy of Pediatrics (AAP)  

• Ask The Doctor - Prenatal Screening vs. Newborn Screening 
  October 2002 Exceptional Parent Magazine.

• Disparity in Newborn Blood Screenings Puts Infants at Risk
  Nursing Spectrum June 3, 2002

7.     Make an appointment with the targeted person.  State up front exactly how much time you'll need (keep it to under an hour), go prepared, and don't go over your allotted time.  Use this time to tell them what you, as the consumer, want to see in the NBS program in your state.  Do allow a little time to hear what they have to say.  Try not to use meetings to learn about the NBS system, use phone calls for question & answer sessions.  Use meetings for your “presentation”.

8.     Follow up all meetings and phone calls with a “thank-you for your time” letter or email.  This is important no matter how different their views may be from yours.  Networking will play a key role in your advocacy success.  Make yourself known to the NBS program staff.

9.     Contact the science and medical writer(s), for all your local/area newspapers, to encourage them to do stories on newborn screening.  Normally, you can find the telephone numbers for these in the Yellow Pages of your local phone book under “Newspapers”.  When you call simply ask to speak with the science/medical reporter directly.  More than likely you will have to call numerous times to actually speak with the person.  Be prepared to “hound” these people if necessary.  You will find enclosed a sample letter to the press.

10.  Contact the medical reporter of your local TV news station(s) to
      encourage them to do stories on newborn screening.  Be prepared to
     keep calling these people as well.

11.  Another awareness avenue, which is effective, especially for gaining public understanding and support, is to stage an event to benefit this cause.  Events such as the Susan G. Kohman "Race for the Cure", the March of Dimes “Walk America” campaign,  "antique" auction, or a benefit concert with local celebrities or even just a neighborhood garage sale with lots of local media coverage.

12.  Contact your local hospitals and Ob/Gyns about speaking at their childbirth classes. These parents are very receptive and appreciate learning about NBS. 

13.  Share your story with everyone who will listen.  The more you share your story, the more people you will touch.  One-on-one contact seems to work best from all angles.  People remember more when they hear your story straight from you, than they do reading it in a local newspaper.

14.  Speak at your church functions about newborn screening and your story.  Make copies of NBS materials to leave at the church for others to pick up.

15.  The next time you go to the dentist, doctor, or even to visit someone in the hospital, leave a handful of NBS pamphlets in the waiting room.  It’s amazing what people will read while they’re waiting to be seen.  This is the only time some people ever read. Learn more about the Handout America Campaign.

16.  Visit your local colleges and university to speak to the medical student and nursing classes.  Most professors are eager to have speakers visit their classes.  Encourage professors to make NBS a special project, or a required research area.

17.  Participate in letter writing campaigns.  Your help is needed in several letter writing campaigns.

18. Request to be a member of your state's Newborn Screening Advisory Committee (NBSAC) if they have one.  If they do not allow consumers to be members, request that they do and attend all meetings anyway.  As a state resident and tax payer, you should be able to attend the meetings of your NBSAC.  If you have any resistance to your attendance, be sure to contact your Governor and state legislators regarding it.

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