Eliza Jane Scovill died at age 3 through no fault of her own. Her death was not caused by Sudden Infant Death Syndrome. She did not die of cancer. She was not killed by a thug on a street corner. According to the Los Angeles County Coroner’s office, this little girl died of AIDS in September 2005 and in the opinion of several doctors, her death could have been prevented.
“It was an unfortunate death,” said Dr. Wilbert Mason, division head of Infectious Disease at Children’s Hospital Los Angeles, in regards to the circumstances around the death of little Scovill, who had not previously been tested for HIV.
It was unfortunate because had she been tested for HIV, she may not have died from AIDS at age 3. Theoretically speaking, one-fourth of the population infected with HIV or AIDS could die the same way. According to the Centers for Disease Control, in 2003 an approximate 1.039 million to 1.85 million people in the U.S. were living with HIV/AIDS and only 73 to 76 percent were diagnosed and aware of their disease. Things are about to change and most say that it will be for the better. In a huge effort to change these statistics, in September the CDC announced radically new recommendations for guidelines on HIV testing.
Currently, the policy requires that all individuals who request testing undergo extensive counseling prior to the test. Much of the problem with the testing has been created by the stigma surrounding AIDS and HIV. Many people don’t think to be tested because of denial, fear or ignorance, and the CDC is seeking to change that.
“We are recommending that HIV screening become a routine part of medical care for all patients between the ages of 13 and 64 and that additional steps to enhance routine voluntary screening of pregnant women be taken, so that they can advance the dramatic progress already made in reducing mother to child transmission of HIV in the United States,” said Dr. Julie Gerberding, director of the CDC, in a media telebriefing Sept. 21.
It is important to realize, however, that these recommendations are currently only recommendations and nothing more.
“These are advisory guidelines,” Mason said. “They are not law, and so these will help in terms of getting laws passed that will make way for these recommendations to go forward.” When fully implemented, the ideal goal would be to know the HIV status of everyone and to eventually eradicate the virus altogether.
“No child in the United States should be HIV infected from birth,” Gerberding said. “No person in the United States should not have access to treatment or diagnosis, and ultimately no person in the United States should acquire HIV infection. In other words, we ought to be able to eliminate HIV transmission in the future.”
However, Christine Maggiore, the mother of Scovill, disagrees with this. Since being diagnosed as HIV positive in 1992, she said she has discovered evidence that has led her to question the use and results of HIV tests.
“To an extent, every test is misused,” Maggiore said, adding that if this policy had been in effect prior to Scovill’s death, she would have opted out of the testing for them. Her 9-year-old son, Charlie, was tested three times after the death of his sister and each time he tested negative. Her own testing experience was traumatic enough.
Having been coerced into taking the test by a gynecologist who told her that it was a social act of consciousness, the results Maggiore received changed not only the way that others saw her, but also the way that she saw herself.
When diagnosed as HIV positive, the doctor called her crying over the phone, Maggiore said. She was offered no pre-test or post-test counseling and was devastated.
“At the time, I felt like I was really happening. I had this multi-million dollar clothing business. I was going to school at night in an accelerated degree program to finally get my MBA. I was pulling straight As. I had friends. I had this house that I had bought and remodeled on my own,” Maggiore said.
According to her, she had everything she wanted. And then she was diagnosed HIV positive.
“My life was over,” she said. “Any hopes, any plans. I was a loser and I totally blew it. It was devastating.”
However, the process of testing Maggiore underwent in 1992 is much less advanced and detailed than the process that the health care system follows today. Now even the face of HIV testing as it is today is about to change drastically, thanks to advanced technology and more detailed screenings.
Maggiore also expressed sentiment regarding the policy of HIV testing within the jurisdiction of child services.
“People lose their kids all the time for reasons of social judgment that have nothing to do with the true safety and welfare and the benefit of the kids,” Maggiore said.
Experts believe, however, that HIV testing and treatment is scientifically and medically in the best interest of those children considered to be at high risk for contracting the virus.
“Our division (of Infectious Disease at Children’s Hospital Los Angeles)? is very in favor of that approach because it will enable us to identify more people with HIV and, as far as pediatrics goes, more women of childbearing age who might pass on HIV to their children, so we are in favor of that approach,” Mason said, adding that “by report, (HIV tests) are quite accurate.”
The new recommendations are being set forth with the hopes of combining the accuracy of HIV testing with the widespread availability of HIV testing in order to greatly diminish the detrimental affects of the disease as a whole.
“The goal of the new recommendations is to ensure that everyone who seeks medical care also has the opportunity to learn if they’re infected with HIV,” said Dr. Kevin Fenton, Director of the National Center for HIV, STD and TB prevention at the Centers for Disease Control and Prevention, in the CDC Media Telebriefing. “While these recommendations are only one part of our efforts to increase opportunities for HIV testing through multiple venues and approaches, they represent a significant step forward towards improving diagnosis in health care settings.”
These changes will also be seen at CSUN, although the full extent remains unknown.
“The Student Health Center at Cal State Northridge is reviewing these recommendations and will be meeting with the student health services advisory committee at the chancellor’s office to discuss revision of policies and procedures,” said Dr. Yolanda Reid Chassiakos, director of the Klotz Student Health Center.
Currently, however, the university student health center offers a variety of HIV testing options for any student who feels that he or she may be at risk. Free of charge, the health center offers a program that offers pre-test counseling and risk assessment as well as an oral HIV test with same day results and post-counseling, Chassiakos said.
Regardless of the variety and quality of services currently being offered, one-quarter of the HIV/AIDS population remains to be tested and diagnosed with the disease, which may kill them. With an early detection, however, the quality of life may be greatly improved.
“We think routine testing is an important strategy,” said Justin Burke of the AIDS Project Los Angeles, an HIV/AIDS advocacy group, and most experts seem to agree with him.
“Early diagnosis and treatment may result in an improved prognosis and a longer life,” Chassiakos said. These new recommendations set forth by the CDC will bring just that and in doing so, possibly prevent the deaths of many more Scovills in the days to come.