Philadelphia’s Bebashi Celebrates 28 Years of Helping Women Living With HIV/AIDS
On May 31, Philadelphia-based HIV/AIDS awareness and prevention organization Bebashi celebrated 28 years of serving and educating the community with an Open House event at their Spring Garden St. headquarters. What began as a focused, grassroots effort to provide HIV/AIDS education to men and women of color is now a full-fledged operation that offers a comprehensive list of services to Philadelphia's urban population.
While Bebashi offers a wide range of resources to persons of all genders, many of their programs and support groups are devoted specifically to the health and wellness of women. Although case management and counseling for those afflicted with HIV and AIDS remains a major focal point for the organization, Bebashi provides a number of services geared toward educating women of all ages on important health matters, often serving as a conduit that helps direct them to additional outside resources and programs that address their specific health concerns.
Bebashi's Our Bodies program aims to educate low-income, urban women about breast cancer and connect them to resources that provide free or low-cost mammograms and screenings. The HYPE and Text 4 Truth Teen Program utilizes the power of on-site workshops and mobile technology to inform and attempt to reduce risk behaviors in young people that might otherwise result in unwanted pregnancies or sexually transmitted diseases.
As Bebashi has come a long way in terms of its reach throughout Philadelphia, so have many of the women who have been involved with the organization.
JoAnn Williams has been a case management supervisor with Bebashi for over 11 years. In that time, she's witnessed first-hand the positive impact Bebashi has made on the community.
Williams manages a caseload of about 30 women and families, and also heads up an on-site women's support group that meets twice each month. Beyond discussing the management of HIV-treatment, the support group also provides a comprehensive forum for women to discuss any personal issues they may have and aid them in the development of life skills.
Additionally, Williams is heavily involved in Bebashi's Circle of Care program, which helps to eliminate the barriers faced by HIV-positive women so that they can receive prenatal care that may help their children to be born HIV-negative. The program also helps ensure that those children who are born positive receive the proper medication after birth.
Without Treatment, HIV Spirals Downward
Williams notes that there aren't very many younger women in her case load and that most of her cases fall between the ages of 30 and 74 years of age. While there is no singular profile of a "typical" HIV-positive woman, Williams points out that many of the women she encounters struggle with mental health disorders.
"A lot of times, they are in denial. If they can't get treatment, they continue to spiral downward," said Williams. While these women are often lucid enough to make it to their doctors' appointments, "it seems like everything else in their lives is out of control. That's why I reiterate to them that there's nothing wrong with going to a therapist or asking for help. And hopefully, they'll hear it one day."
Williams points out that there is never a shortage of clients. While the support groups offer a warm, welcoming community and family atmosphere, case management is "not a life-long program." Usually, when people are able to manage their illness and reach their goals as set by the care plan, they are comfortable enough to leave the program.
"Bebashi has one of the area's shortest waiting lists because we keep people moving along," said Williams. Within her role as case management supervisor, she is quick to dispel any stereotypes. "It's important for everybody to know that we're all at risk. It's not only a certain group of people who will get the virus. The general public still believes that people who get HIV are promiscuous or drug users or did something to bring this upon themselves. What I see are a lot of women who think that they are in monogamous relationships, but are really not in monogamous relationships."
Infidelity puts both halves of a couple at risk of infection, regardless of how long they've been together. Yet, even couples who are faithful to one another cannot be too careful.
Older Women Face Rising Rates of HIV
Nancy Molock, a vibrant 63-year-old grandmother, was diagnosed with HIV at the age of 51. Her fianc� (later husband) had been feeling ill for some time.
"You know how men are," she laughed. "They don't want to go to the doctor." When Molock's fianc� finally agreed to visit the hospital emergency room, it was revealed that he had pneumocystis pneumonia (PCP), the pneumonia associated with AIDS. She was tested immediately after and discovered that she was also positive.
Molock acknowledged that going through menopause and the physical changes that come with it may have played a role in her contracting HIV. As a result of hormonal changes in the body, one of the physiological accompaniments of menopause is vaginal atrophy, in which the vaginal walls become dry and thin. Sexual intercourse may cause tears in the vaginal wall, which, in turn, makes a woman more vulnerable to the virus.
"You think that when you go through menopause, you can't get pregnant," Molock recalled. "I wasn't quite as informed about HIV then, because, when you're a certain age, you think it only happens to younger women and younger people. You never think that you'll meet someone your age, someone who's 50. You figure the person is settled down and doesn't have a lot of partners. But you don't know that person had a past and how what they did in a previous life can affect them later in life."
Although Molock 's own family was supportive of her, she felt a need to connect with others facing similar health concerns. She found Bebashi through a search online and came to one of the women's support group meetings and found both the staff and group full of friendly, down-to-earth people. That was three years ago, and she's been attending support group sessions ever since.
"On this journey, everybody needs support," said Molock. "You need to be around people that you know are going through the same things you're going through. And you need to talk to people who understand what you're going through."
Adherence is the Key to Longevity
In addition to providing women a forum to discuss their personal journeys in dealing with HIV, Bebashi's support group stresses the benefits of adhering to a strict medication regimen to keep the virus from progressing.
Molock herself only takes three pills each day to help her successfully maintain a high CD4 count of 1,337. This count measures the amount of white blood cells in the body that help fight infection. The CDC classifieds any CD4 count under 200 as AIDS.
In her three years of attending support group meetings with Bebashi, Molock has encountered a few people who, at one point, had a CD4 count as low as 1 or 2. But they bounced back from it. She notes that the key to maintaining a high CD4 count is sticking to a regular medication schedule, and taking the same pills at the same time each day. Although Bebashi's case management program offers guidance in that respect, adhering to a pill regimen can sometimes be easier said than done.
As Molock noted, sometimes physical side effects of the medication and the intangible, psychological factors of living with HIV are entwined.
"I was on a medication called Sustiva, which gives you very weird dreams," said Molock. Regardless, she kept taking the medication for five years since it was raising her CD4 count and kept her viral levels undetectable. After years of horrible nightmares and waking up and feeling as if she was in a fog, Molock was able to switch to a new medication that has kept her CD4 levels elevated and has no adverse side effects.
Since HIV first landed on the public radar in the '80s, the amount of medication required for those afflicted to maintain their health has reduced drastically. Gladys Gutierrez, a 53-year old woman, has been living with HIV for over 25 years, having contracted the virus due to a series of contaminated blood transfusions she received following the birth of her son.
She currently takes five pills each day, plus one for seizures. Compared to when she first discovered she was positive, Gutierrez takes far fewer medications now.
"When I was first diagnosed, I was taking 23 pills in the morning and 18 at night. It was hard," said Gutierrez. Today, she receives full support from her family -- particularly her pre-teen granddaughter, who calls her at 6 p.m. every evening like clockwork to be sure she takes her medicine. Certain pills make Gutierrez nauseous, so she has to be sure to take them before others to ensure she receives the full effect of her medications.
A Complete Roster of Wellness Programs
A recovering alcoholic celebrating 13 years of sobriety, Gutierrez found her way to Bebashi 12 years ago through the program she had joined that referred her to the organization and told her that they could help. She entered Bebashi's case management program to help her stay on track and keep her doctor's appointments. Currently, she is on Bebashi's advisory board, sponsors newcomers, and speaks to those in the program and support group, taking on more of a leadership role.
Gutierrez credits Bebashi for helping her through several other health issues she had faced including back surgery and surviving breast cancer. She stays active and has participated in walks for breast cancer, as well as Bebashi's Pink Playground fundraising event. In addition to its numerous programs devoted to dealing with HIV and AIDS, Bebashi helps uninsured women with breast cancer obtain vouchers for much-needed medical care and treatment.
"Right now, I feel healthier than I've ever been," said Gutierrez. Upbeat and optimistic, she is happy to welcome newcomers to the group and offer the same amount of compassion and support that she received when she first came to Bebashi.
Although Bebashi initially began as a vehicle to reach out to the African-American community about issues pertaining to HIV and AIDS, the organization welcomes people of all ethnic backgrounds. Gutierrez, who is Puerto Rican, noted, "it's like a little family. We're open to all kinds of people. We do not discriminate. We have co-ed support groups, too -- not just for women, but also for men with HIV."
"We don't just support each other at Bebashi. We support each other outside of the group, too," said Gutierrez. "We exchange numbers. We cookout and do Zumba together. And a little clique of us will even go out dancing on Monday nights. If anyone ever needs to have somebody to talk to and they can't wait until [weekly] group [meetings], they can just call somebody and talk to them. We're one, big, happy family."
Molock echoed a similar sentiment, saying, "To hear what somebody else is going through and to give them some insight, it makes me feel better. Everybody has to come to grips with HIV in their own time. It's not about going to the support groups to get support, it's to give support, too."
Going strong in its 28th year of operation, Bebashi continues to provide support and raise awareness in the fight against HIV and AIDS. On Saturday June 29, from 11 a.m.-4 p.m., Bebashi will host a health fair that coincides with National HIV Testing Day. The event will be held in the heart of Philadelphia's Brewerytown section at The Athletic Center, 1401-55 North 26th Street, and will offer free health screenings including testing for HIV, blood pressure and insulin levels.
In addition to live entertainment and children's activities, the event will also provide Brewerytown residents with information on a variety of local social services resources available ranging from life skills and job training to hunger relief and substance abuse counseling.
For more information, visit www.bebashi.org