Tory Casterline is the walking definition of an active college student.
A senior at Pennsylvania's Gettysburg College, Casterline spends her time between finishing up a degree in psychology and working for Gettysburg as both a tour guide and special-event tech crew member, participating in the many service fraternities that she has been a part of since early in her colligate career.
Unfortunately, last summer Casterline was told that it was she, and her family, who would now need the unselfish help of others.
In the summer of 2008, Casterline's older sister, Jennifer, was diagnosed with myelofibrosis, a blood disorder that attacks the body's bone marrow.
Jennifer's prognosis was far from good and her doctors immediately started her off on chemotherapy in order to improve her condition.
After chemo proved unsuccessful, Jennifer's doctors felt the only option left was a bone-marrow transplant.
A notoriously frustrating procedure, bone-marrow transplants require an exact match donor in order to be of any help to the recipient. Knowing the long odds of finding a match, Casterline turned to her close group of friends for help.
"I only asked a few friends to join the registry. It is a big commitment so I didn't feel comfortable asking many people, only those that are really close to me and familiar with my sister's situation," said Casterline. "Every friend I asked was very receptive to the idea and most tried to join the registry. These friends have even recruited other friends and family members, making it an even larger effort than I had imagined."
In spite of long odds, the hope was that the more friends and family that registered the more likely a suitable match for Jennifer would be found.
One of the groups that came to Casterline's aid during this time of need was Gettysburg College's gay community.
An active member of Gettysburg's Gay-Straight Alliance, Casterline has many gay and lesbian friends on campus. Eager to help out an accepting friend, some within this community decided to register at www.marrow.org in order to see if they were a possible match.
To the surprise of both Casterline and her donor friends, some who came to her sister's aid were not even allowed to register. This was due to a long-standing regulation held by the Food and Drug Administration that prohibits sexually active gay males from donating their marrow.
In the United States, good Samaritans wishing to give marrow or blood must complete a questionnaire before they are allowed to donate.
The questionnaire is designed to eliminate potential donors who fall into high-risk groups for spreading infectious diseases that are easily transmitted through blood and marrow, diseases such as hepatitis and HIV/AIDS.
One of the more controversial eliminator questions asked before one can donate blood or marrow prohibits men who have had sex with men after 1977 from becoming donors.
It is this regulation that both surprised and confused Casterline and her friends and also has frustrated leading donor organizations such as the American Association of Blood Banks and the American Red Cross.
Currently, the Food & Drug Administration ( FDA ) states that its policy is "based on the documented increased risk of certain transfusion transmissible infections, such as HIV," and "is not based on any judgment concerning the donor's sexual orientation."
Data researched by the Center for Disease Control and Prevention ( CDC ) in 2006 found that, in terms of sexual orientation, men who have had sex with men do carry a high rate of HIV/AIDS, representing 48 percent of all people living with the disease.
This, however, was not the only high risk group the CDC listed in its 2006 report. The report also discovered that when comparing HIV/AIDS rates between ethnic groups African Americans had a similarly high rate to that of men who have had sex with men.
According to the report, African Americans accounted for 46 percent of people living with HIV/AIDS in 2006.
Both African Americans and gay males represent a similar percentage of the U.S. population, somewhere between 10 and 15 percent. Currently there is no FDA regulation that lists African Americans as a high risk group that should be deferred from donating blood or marrow.
"The current lifetime deferral for men who have had sex with other men is unwarranted," stated Stephanie Millian, who is the director of biomedical communication at the American Red Cross' national headquarters. "Donor deferral criteria should be modified and made comparable with criteria for other groups at increased risk for sexual transmission of transfusion-transmitted infections. The American Red Cross is dedicated to fairness and equity in the formulation and administration of donor selection criteria in order to ensure a safe and plentiful blood supply for all patients regardless of beliefs, race, gender or sexual persuasion."
Since 1997 the American Red Cross, American Association of Blood Banks and America's Blood Centers have advocated for a revision to the FDA's deferral policy regarding sexually active gay males.
In 2000 these groups addressed the FDA with a plan for the regulation that would require a waiting period between sexual activity and donation, similar to regulations for straight donors.
The requested change was denied by the FDA, claiming that technology had not progressed enough to safely eliminate the high risk this group represented.
The three organizations attempted to change the regulations once again in 2006, stating in an official letter that testing methods had progressed enough to accurately determine whether a person had been infected with the virus between 10 and 21 days after exposure.
These organizations concluded that "Beyond this window period, there is no valid scientific reason to differentiate between individuals infected a few months or many years previously."
The letter goes on to state that the current regulations may also be perceived as discriminatory and might dissuade possible donors who perceive the policy as unfair.
After discussion about the issue the FDA reaffirmed its policy on a lifetime deferral for sexually active gay men.
Locally, a spokeswoman for the Mid-American offices of the Red Cross, the organization that handles the Chicagoland area, stated that even if a sexually active gay male were to undergo a full range of tests for any transmittable diseases and discovered then that he was negative for all possible risks it would still be against FDA regulations for him to donate blood or marrow.
Casterline is still hopeful that her sister will find a donor but is still confused and saddened by the FDA's policy.
"I think the FDA's policy is extremely discriminatory," stated Casterline. "It seems absurd that they would reject all male donors who have slept with other males without taking into account safe sex or number of sex partners. Not only is this unfair for the donors, but also for those who require donations. Who knows how many people could have been saved by those who were rejected by the donation process?"
Currently, Casterline and her family's situation is not that uncommon. According to a spokeswoman for the American Bone Marrow Donor Registry far less then half of all donor recipients are able to find suitable donors, contributing to the 42,000 people who died last year alone from blood related diseases.
Pictured: A section of the Food & Drug Administration's blood-donor questionnaire that asks about same-sex sexual partners.
