On December 1 each year, you will find countries around the world commemorating World AIDS Day to raise awareness of the spreading of HIV infection. Each year, a theme is chosen for the campaign by UNAIDS. Starting in 2008, the World AIDS Campaign’s Global Steering Committee has chosen the theme, with the input from other organizations and government agencies. This year’s theme is “Getting to Zero,” which refers to zero new HIV infections, zero discrimination, and zero AIDS-related deaths this year.
One way to accomplish “getting to zero” is implementing vaccine trials, according to a release issued by GeoVax Labs, a biotechnology company located in Atlanta, Georgia, that creates and tests HIV/AIDS vaccines. However, a common problem many trials face is recruiting participants from at-risk communities. To reveal the reasons behind the lack of participation, researchers from the University of Toronto coordinated a study targeting nine focus groups made up of at-risk persons. In the end, the surveys exposed many misconceptions the individuals had regarding the vaccine trials. Recently, TheBody.com reported that many people do not take part in these trials because they believe it puts them at risk of getting AIDS, and they are skeptical of why the trials target people living in at-risk communities.
Gay and bisexual black men are one of the most susceptible populations and account for almost 25% of new HIV infections in the United States. The number of new infections overall has not changed significantly, with roughly 50,000 cases every year. However, vaccine developments and social initiatives are developed with frequency. A new $2.4 million campaign by the CDC was announced in November 2011, targeting gay and bisexual black men and encouraging them to be tested.
Back when he was a presidential candidate, Barack Obama promised to develop and begin to implement a comprehensive national HIV/AIDS strategy in the first year of his presidency. According to his campaign Web site, this initiative would, among other things, develop programs to reduce HIV infection, promote AIDS prevention, increase access to care and reduce HIV-related health disparities. Specifically, Obama pledged to fight HIV/AIDS disparities in minority communities by “promoting innovative HIV/AIDS testing initiatives in minority communities and partnering with community leaders.”
Now, only a little more than three months into his presidency, the Obama White House has taken an important first step in that direction by launching a major national AIDS awareness initiative, Act Against AIDS. Administered by the federal Centers for Disease Control and Prevention (CDC), this five-year, multifaceted communication campaign features messages and outreach targeted specifically to the minority communities most severely affected by AIDS. Initially, the campaign will focus on African Americans, who represent roughly half of all new HIV infections and AIDS deaths in the U.S. each year. Subsequent phases will focus on other high-risk minority populations, including Hispanics and men who have sex with men (MSMs).
To capture the public’s attention and raise awareness of the fact that the AIDS epidemic is still a serious health threat in America despite recent advances in treatment, the first phase of the Act Against AIDS campaign emphasizes the message that “every nine and a half minutes, another person in the U.S. is infected with HIV.” The CDC has created “9½ minutes” campaign materials in a variety of media, including video, audio, print and online.
The campaign’s Web site, www.cdc.gov/nineandahalfminutes/, provides a wealth of information on HIV prevention, testing (including how to locate the nearest HIV test site), living with HIV and delaying the onset of AIDS. Perhaps most important, the site (which includes a Spanish-language version) offers uncensored, straight talk about condoms, safe sex and other HIV-prevention issues—a welcome change from the watered-down information that was all too prevalent during the Bush years.
As for partnering with community leaders, the CDC has created the Act Against AIDS Leadership Initiative, a collaborative effort between 14 of the nation’s most influential African American organizations, to integrate HIV prevention into each organization’s outreach programs. Groups participating in this initiative include the NAACP, the National Urban League, 100 Black Men of America and the National Council of Negro Women.
Nurses can find more information about the Act Against AIDS awareness campaign, along with free downloadable videos, podcasts, fact sheets and other campaign materials, at www.cdc.gov/nineandahalfminutes/.
The University of Illinois at Chicago College of Nursing has been awarded a $1.25 million grant from the National Institute of Nursing Research to launch an unusual AIDS prevention community outreach project—unusual because the communities are located in Malawi, one of the poorest countries in Africa.
According to Malawi’s National AIDS Control Programme, an estimated 265,000 of the nation’s citizens have AIDS and another 735,000—10% of the total population—are infected with HIV. To try to reverse this alarming trend, the UIC nursing school will partner with the University of Malawi Kamuza College of Nursing to develop a five-year program designed to train and mobilize health workers in rural Malawi to become leaders in fighting the AIDS pandemic.
Kathleen Norr, PhD, an associate professor of maternal-child health nursing at UIC who has also been involved in AIDS prevention programs in Botswana, Lithuania, the United States and other countries, will head the project to design and implement an effective, culturally sensitive AIDS prevention model in Malawi, in collaboration with Chrissie Kaponda, PhD, and other University of Malawi nursing faculty. The program will consist of two phases:
• First, health care workers at a state-run hospital in one of Malawi’s 27 districts will receive a week of peer-education training, covering such topics as human sexuality, HIV transmission, the use of condoms and strategies for negotiating safe-sex practices with partners.
• In Phase Two, the health workers who received this training will instruct nurses and medical officers in one of the district’s rural clinics, as well as leaders of the rural villages the clinic serves. They will also organize community peer groups to teach villagers about AIDS prevention and help parents talk with their children about safe sexual behaviors.
“The curriculum is designed to increase knowledge and awareness of AIDS and alter attitudes and behaviors that allow the disease to spread,” Norr explains. By educating hospital and clinic staff first, she adds, the program hopes to help Malawi’s medical professionals improve health care services for people with AIDS, who are often neglected because their cases are viewed as hopeless.
An epidemic once referred to as “a gay white man’s disease” is now taking its toll on black women.
Today the AIDS virus has found its way into the heart of many black communities, especially in the South, and it is eating away at the life source of the African American family: the black woman. According to the Centers for Disease Control and Prevention (CDC), black women are 25 times more likely to contract AIDS than Caucasian women. Furthermore, African American women now comprise 34% of new AIDS cases in the U.S., making them the most affected group of AIDS victims in the nation.
AIDS is the number one cause of death among African American women between the ages of 25 and 34, according to All About Black Health.com. Our mothers, daughters and sisters are suffering through “endless rounds of doctor visits, night sweats, debilitating medications, body-numbing fatigue” and ultimately death, the Web site reports.
According to the Henry J. Kaiser Family Foundation, 63% of all female AIDS cases in the U.S. as of 2001 were African American women, and HIV infects one in 160 African American women.
Taking Action in Florida
Research from the Kaiser Family Foundation also indicates that in 2001, Florida was the state with the second largest population of African Americans estimated to be living with AIDS—nearly 20,000 people. (New York was at number one with 27,080 black AIDS patients.) Faced with this grim statistic, many state, county and local health agencies here in Florida are doing aggressive outreach to address the crisis of AIDS in the black community.
Patricia Colson is an African American woman living with HIV. She was diagnosed in 2001. Today Colson is involved in many community outreach programs in the Gainesville, Fla., area as an AIDS advocate for the Gainesville Health Department. She gives talks to students and other at-risk groups about the dangers of drug addiction and how it can increase the risk of contracting HIV. She says she was addicted to crack cocaine for 17 years and her drug addiction drove her to prostitution.
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“I share my story by going to drug rehab centers, churches and jails,” says Colson. “Many people have this stigma [that] if you have AIDS, then you’re dirty. My family was going to give me a separate spoon and my own cup.” By helping people see the “real,” human face of HIV, she hopes to spread the facts about AIDS and eliminate misconceptions in the classroom and in inner city neighborhoods.
“In the African American community, we are dying,” she says. “More and more of us are becoming infected.”
Another agency that is working to combat the spread of AIDS among African American women in the Gainesville area is the Alachua County Health Department. Gay Koehler-Sides is the department’s HIV/AIDS Human Services Program consultant. Her office conducts various screening and prevention programs that include HIV testing in jails and at the health department, and distributing condoms at St. Francis House, a non-profit organization that provides services to homeless people in Alachua County. The department also participates in National Black HIV/AIDS Awareness Day.
“We offer video-based [education] programs geared toward heterosexual black females,” says Koehler-Sides. “I believe poverty and lack of education go hand in hand. If we look at the statistics, the higher a person’s education, the [better] that person’s health.”
The Causes Behind the Crisis
According to the CDC, one of the main reasons for the “feminization of AIDS” and its disproportionately high occurrence among black women is the lifestyle of many African Americans. Poverty, unprotected sex, intravenous drug use and the lack of AIDS awareness in the black community are all significant factors contributing to the expansion of the disease.
Nearly 30% of Americans living in poverty are African American women, according to a recent article in The Washington Post. And a recent report in Ebony magazine confirms that many black women with AIDS are intravenous drug users or sex partners of intravenous drug users. Many women also contract HIV through unprotected heterosexual sex with an infected person. The lack of women’s empowerment in regard to “condom negotiation” with their male sexual partners is a leading cause of the proliferation of the disease in black women.
AIDS education programs, affordable medical care and effective social programs, as well as increased funding for HIV/AIDS research, can all make a difference in helping black communities learn from—rather than suffer through—the AIDS crisis, according to the Center for International Development at Harvard University. Some examples of successful educational initiatives in various parts of the country are Blacks Educating Blacks About Sexual Health Issues (BEBASHI) in Philadelphia, The Minority Task Force on AIDS (MTFA) in New York City—whose programs reach about 10,000 people each year—and telephone helplines such as the Florida Department of Health’s Florida HIV/AIDS Hotline.
“AIDS Doesn’t Discriminate”
Addressing the alarming rise in HIV and AIDS rates among African American women must become one of our country’s top public health priorities. But even though the face of AIDS in America today is more and more likely to be that of a black female, we must be careful not to stereotype AIDS as “a black women’s disease.”
Michael Rajner is a coordinator for the Campaign to End AIDS (C2EA), a diverse national activist coalition of people living with HIV/AIDS. He was diagnosed with AIDS 10 years ago. Rajner reminds us that when AIDS was first identified 25 years ago, it was called GRID (Gay-Related Immune Deficiency), a name he feels was imposed as a stigma on gay men. As a gay white man living with HIV, Rajner is very active in the political and social aspects of HIV/AIDS and stresses that the disease does not distinguish between races, genders or sexual orientation.
“AIDS affects everyone,” he says. “It doesn’t discriminate. If you pay taxes, AIDS affects you.”
Rajner encourages Americans to embrace the fight against AIDS as not just the government’s problem but as society’s responsibility as a whole. “The black churches have taken a huge leadership role and embraced their [HIV-positive] brothers and sisters,” he says. “We can end this [epidemic] if we follow the black churches’ lead. We need to spread the word, not just spread the virus.”
Editor’s Note: This article is adapted from an essay submitted with an application to the 2005 ExceptionalNurse.com Scholarship Awards. Because of the sensitive nature of the topic, the author has requested that only his initials be used.
I know I have more than the average nurse to contribute to the nursing profession. As a nurse with HIV who knows what it is like to live with a chronic disease and to go through the maze and humiliation of the welfare system, I have much wisdom to offer my patients and fellow nurses.
I have lost friends, family and coworkers to HIV. No, I didn’t lose them by their untimely death; I lost them because of the ignorance and fear that surrounds HIV/AIDS. There is a stigma of living with HIV that is perpetuated through the media. The stereotyped image of a person with HIV is someone who uses intravenous drugs, has unsafe sex with multiple partners and lives life on the edge. While this may be true for some, we cannot all be placed in the same box. Some people with HIV, like myself, simply acquired it through love and trust–a big price to pay for a meaningful relationship.
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When I was diagnosed, my CD4 count or T-cells were 30 (normal should be above 600). I was working as an LPN and was enrolled in an RN program. When told I only had six months to live, I decided to go on a leave of absence from my job to travel and rest. I started the HIV meds, put school on hold, cashed in all my life insurance policies and started my journey as a “person with AIDS.” I went on Social Security Disability, Supplemental Security Income (SSI) and Medicare/MediPass.
During that time, I felt like a leper. I had few outlets for social interaction except for my HIV/AIDS support group. I lived on $1,000 per month. This had to cover my rent, utilities, car payments, co-pay for medications and doctor visits. I had little left for food or other needs.
For almost two years, I was on welfare. The Community AIDS Network helped with groceries and my personal needs. I lost weight, had many reactions to medications and stayed in bed most of the time.
Finally, I realized that I was not going to die as the doctors had predicted. I decided to go back to work. This turned out to be no easy task. A nurse diagnosed with AIDS is not something a health care institution wants on its payroll.
After much persuasion and networking I came off my leave of absence and started back to work part time. A year later, I was doing fine and my T-cells slowly, very slowly, started to climb. So I went back to work full time. In 2003 I found an online, self-paced RN program that worked well for me. The journey to become an RN will have taken me 15 years.
Walking In Their Shoes
I am a nurse, but I am not just any nurse. I am a special nurse with a unique gift that allows me to make a special contribution to my profession.
I have taken care of patients who were newly diagnosed with HIV and I have felt their shock, disbelief and anxious feelings of “what now?” When the doctor or nurse practitioner gives such news to a patient, the professional can only think and explain it in technical medical terms. Most health care professionals cannot feel what it is like to be told you have a chronic disease, one that cannot be cured even with today’s advanced medical care.
As the doctor leaves the room and the patient is left to ponder what happens now, I can step in and fill the void. I have walked in their shoes, remembering when I was told the devastating news, “You have HIV.” Back then, I had no one to turn to.
Now, I have the greatest gift of all to share. I’ve been there, experienced it, know the different treatment plans, and I’m a survivor. I have referred many of my patients to the appropriate agencies to help them obtain education about HIV, care options and support groups. I listen to their expressions of disbelief, their questions of “how did this happen to me?” And I can respond with the understanding and empathy they need.
When I disclose my status to patients, I always hear the same thing: “You don’t look sick.” My response is, “I didn’t know I was supposed to look sick!” Then we both laugh. Again, I hear the stigma. People with HIV are supposed to look sick. What better education for patients than seeing and talking to a real person who has experienced what they are going through? This is the gift I give.
When you live with a chronic disease day in and day out, you become familiar with what is changing in your body and in your life. You can educate and inspire your patients and coworkers just by showing up for work and setting a positive example. Over time, people learn to see you in a different light–not as a person with a chronic illness, but a person who takes what life dishes out and runs with it into their dreams.
I am that person. I go to work every day, and by doing so I’m contributing to the nursing profession and setting an example for all people with disabilities, whether chronic or acute. I’m a daily reminder that if you decide to take charge of your life and health you can do anything, no matter what type of disability you may have.
As I continue my career in nursing and my journey of HIV, I know I will continue to gain even more wisdom to share with my patients and colleagues. I now have diabetes, hypertension and lipoatrophy, all caused by HIV. Each one of these conditions is a disability in its own right. My example of living life to the fullest and not giving up, no matter how difficult or challenging it may become, will only help erase the stigma associated with disability. I believe that to have a disability is to receive a gift.
When you are given this gift, you can either choose to keep it wrapped up or you can open it up and learn to use it to help others. By choosing to open your gift and share your experiences with others, you begin the process of educating, becoming a role model and ending discrimination against persons with disabilities. It’s easy to sit on the sidelines, do nothing and watch the world go by. It’s hard to get on the court with a disability and play. But with the right tools, education and support, everyone with a disability can play in the game.
I used to question, “Why am I here, God?” But now I know the answer. I am here to share my positive gift with the world. I just didn’t know that I’m more positive than most people. . .until now.
