June is National CMV Awareness Month
CMV is the short name for cytomegalovirus, the most common cause of congenital birth defects in developed countries.
Last year, Utah was the first state in the country to pass a CMV law
. The law requires the Utah Department of Health to provide information to physicians, and the doctors are to, in turn, distribute that information to their patients. Unfortunately, that chain of messaging is not always complete, and concerned parties continue to work to ensure correct information is making its way into the hands of the people who need it.
The most prominent of those concerned parties is the Utah CMV Council. Annie Culley and Sara Doutre founded this non-profit organization with the specific goal of helping the Utah Department of Health with their CMV public awareness campaign. They're focused on getting information about CMV to the general public, with a particular target of women.
Culley and Doutre have been attending health fairs in Utah communities, as well as giving out information to doctors' offices and pretty much anyone they know. To further this public awareness goal, they will have a booth at the Channel 2 News "Your Health Expo" on July 11th & 12th, and they're planning to host a special benefit dinner in Salt Lake in the fall. Their
launched just yesterday, and you can also find them on Facebook
. "We are also going to serve in family/pregnancy support, so if you know families in need or newly diagnosed, please let them know about us!" said Culley in a recent email to me.
If you'd like to learn more about CMV and be a part of reducing cases of this disease in babies, you should make plans to attend the first ever Utah CMV Public Health & Policy Conference. Culley will serve on the parent committee as well as the abstract review committee for the conference, which will offer continuing education credits (CEU) and has a low registration cost. The conference runs September 26-27, 2014, in Salt Lake City.
Researchers at Intermountain Healthcare and the University of Utah, in conjunction with the National Institutes of Health, are performing a research study to help address CMV. The study abstract is as follows:
Cytomegalovirus (CMV) is the most common congenital infection, with a prevalence of approximately 1% in the United States, translating into 44,000 congenitally infected infants per year. A substantial proportion of these 44,000 infants will die or suffer permanent injury as a result of their infection. The severity of congenital infection is greatest with primary maternal CMV infection. Currently, there is no proven method of preventing congenital CMV infection, and the approach to primary maternal CMV infection in the United States is haphazard and ineffective. One small, non-randomized study suggests that maternal administration of CMV hyperimmune globulin may reduce the rate of congenital CMV infection following maternal primary infection. We propose to screen gravidas in the first half of pregnancy for recent primary CMV infection, and evaluate in a proper randomized clinical trial whether maternal administration of CMV hyperimmune globulin will prevent congenital CMV infection.
As part of this study, we are offering free CMV and HCV screening to pregnant women up to 21 weeks gestation who have a singleton pregnancy. This entails a blood draw of one tube of blood and results of the screening are made available to the patient and to her care provider.
If the patient is found to have a primary CMV infection she will receive an MFM consult/Ultrasound and the opportunity to enroll in the CMV Trial looking at monthly infusions of hyperimmune globulin or placebo with the hope of reducing the rate of transfer of the infection from mother to baby.
Here is the contact info for each of the screening sites. Interested parties can call any of these numbers and schedule a screening.
INTERMOUNTAIN MEDICAL CENTER
UTAH VALLEY MEDICAL CENTER
UNIVERSITY OF UTAH