What's happening in each of the states in SERGG with regard to newborn screening? What are we doing? What should we be doing? How well are we doing the job? How much does it cost? How are we serving the children and families that we identify? Do monies generated by the state newborn screening programs help at all to finance genetic services in our region? We can't answer most of these questions, but at least we can raise them. The strength in the genetics consumer community at this time is seen in the collaboration, lobbying, information distribution and support provided by the families identified through the newborn screening programs.
One important story has evolved as the state of Florida has battled with how to provide the nutritional support that is critical to the children who are identified with PKU. We can all learn from the work that the consumers and their network have undertaken. Dr. Lance Wybel, a neonatologist from Tampa, has contributes some interesting observations on the legislative issues. Unfortunately, so many good ideas, like newborn screening as it was conceived in the 1960's, face almost insurmountable challenges as costs escalate. Mary Z. Pelias, PhD, JD, from New Orleans, shares with us her unique perspective on the research use of newborn screening cards. Let's think again about what we will need to do as a professional genetics community to meet these challenges!
Financing Genetic Services-- How are we ever going to do it? Look at some of the new reimbursement codes presented by Dr. Michael Watson from the ACMG Committee on the Economics of Genetic Services. Some of us might ask,"Whatever happened to the not so distant good old days?" How many of our readers remember when providing genetics services was just that... diagnosis and counseling at no charge. As recently as 1983, genetics programs around the country were facing the crisis of having to bill patients for the first time for counseling services. Is it any wonder that medical genetics, at least as much as any other medical specialty, is having an identity crisis when it comes to financing? Fee for service for many of us was a new concept when we were confronted by an onslaught of HMOs, PPOs and all the other acronyms of middle management that have championed the "cause" of the patient. Managed care threatens to do just that.... He who manages the money, manages the care.
Fortunately, for us, many of our families are willing to work with us to meet the challenge of caring for individuals with complex problems. Are we going to be able to meet this crisis? How can we be sure of our own survival unless the numbers on the bottom line are in the black?
The information in this SERGG Newsletter is neither a comprehensive review, nor an endorsement of the views presented by the articles published here. Comments about a specific program, such as the notes on TENNCARE, are just that... comments. This issue of the SERGG Newsletter gives us a chance to look at several of the practical aspects of providing genetic services including newborn screening and financing. A discussion of legislative and ethical issues are presented to help us appreciate different perspectives of the problems.
Sharing information is the communication game. Let us know if any of the information contained here raises new ideas for you or gives you new insight into your own challenges. Let us know if you have ideas or comments of your own. A letter to the Editor Section will part of the our next hardcopy issue due out in August, 1996.
The main topic for the August issue will be Access to Genetics
Information. Copy for that issue will be put up on the Internet as
it is received. Look for it at our own Web Site- the SERGG Homepage at
http://www.emory.edu:80/PEDIATRICS/sergg/sergg.htm
. Also, in the next issue we'll plan again to focus on a specific
disorder- Marfan Syndrome and the fibrillinopathies.
Thanks to each of our contributors to this issue and to those of you
who requested extra copies of the last two issues.
Virginia K. Proud, MD
Editor
email gene003@uabdpo.dpo.uab.edu
disks Shirley Gann
323 CCB Lab of Medical Genetics
908 S. 20th Street
Birmingham, AL 35294-2050
phone (205)934-4973 fax (205)975-6389
