Dr, Gail Demmler Responds to CMV Awareness Question

In a message dated 2/9/2008 11:55:39 A.M. Eastern Standard Time, Dr. Gail Demmler, J.gjdemmle@TexasChildrensHospital.org answered an e-mail query of mine regarding the importance of a listing of us parents, as is done at the Vietnam Memorial in DC. She responded to me:
1. Yes, the Vietnam memorial with names is very moving. I have been there many times. It is an interesting concept for CMV Awareness because each year babies and children and adults who were born with congenital CMV die from complications of their congenital infection. 2. There are many reasons why I feel CMV Awareness initiatives from the lay population, especially parents and families may be key to conquering CMV. They include1. Since there are no proven effective, safe, licensed vaccines to prevent CMV infection in pregnant women, we need to make them aware that prevention in pregnancy may be accomplished (or may be reduced) by knowing about CMV and who is most likely to transmit CMV to them during pregnancy.2. Some physicians and nurses and clinics do counsel patients and pregnant women about CMV but many do not. If the establishment of health care workers do not do the job, then lay people, esp. families who have been touched and are motivated, are a good source of information, as long as it is factual and backed by professionals.3. For decades my CMV website and a few handfuls elsewhere were all the voices we had, but now, with the CDC finally getting behind some of our efforts, we are likely to see an increase in CMV awareness.4. These efforts may then decrease the number of pregnant women experiencing CMV infections and therefore the number of babies born with CMV infection and disease. We do not have studies to prove this yet, but it would be of interest to do these. 5. To make progress towards treatment and prevention, we need more research focused on the practical outcome of lessening or eliminating the public health impact of congenital CMV infection and disease. 6. To do research, resources are needed, including funds for scientists, doctors, staff, buildings, labs, supplies, etc. 7.To get resources, we need the interest and the support of those who have and allocate the resources. The "establishment" of government, industry, and private funding decision makers have not "had the eyes to see, nor the ears to hear" the message about CMV so far -- perhaps because CMV is so silent and stealth, perhaps because "we CMV people" have been suffering in silence too long. Many groups have advocacy initiatives and strategic plans. Establishments are often "reactive" to new ideas and changes, rather than proactive. Our CMV Registry Research Fund has been funded for almost 30 years from not only small government grants, but also from private donations of people and families and their Foundations, who have been personally touched by CMV. I from my personal experience, think it is a potentially powerful source. 8. To effect change in the prevailing attitudes about congenital CMV, we need to be more vocal and "out there." The messages of real people can be very powerful. Hope that helps a bit. I would love to help you, as needed, on your CMV parent book. Dr. D