AIDS: A Small World After All
In October of 2003, Maria Juma noticed a peculiar cold sensation in her legs. The native of Nairobi, Kenya, could also see that her feet had developed a slightly grayish pallor. Concerned that blood wasn't circulating properly through her legs, she went to see a doctor.
At the time, Juma wasn't particularly distressed about her condition. "It wasn't painful," the 35-year-old married mother of two recalls. "I was walking very strongly. I was doing everything."
The doctor was initially stumped by Juma's condition and decided to perform some blood tests. Within 24 hours the St. Paul resident received a devastating diagnosis: She had tested positive for the human immunodeficiency virus, or HIV. "I cried the whole day and the whole night," says Juma, who moved from Kenya to Minnesota four years ago to join her husband. "I didn't want to see anybody."
Juma, who would only discuss her situation on the condition that she be identified by a pseudonym, initially assumed that the diagnosis was a death sentence. Back in Kenya she'd seen dozens of people waste away and die from the disease. She recalled the fate of a cousin back in Nairobi who contracted HIV. The woman's husband left her. Her children were ostracized because they were assumed to be infected, too. Juma's family would have nothing to do with her. When the cousin eventually died from AIDS, nobody would look after her children. "They went to the streets," Juma relates. "Nobody knows where they are now."
Juma fears that she could face a similar fate. The only person that she has told about her diagnosis is her husband. He is not infected. The couple's two children are also free of the virus. Juma believes that she contracted the disease from a blood transfusion back in Kenya. Although her husband has stood by her, Juma worries that other members of the tight-knit Kenyan community in the Twin Cities will find out about her status.
"Nobody wants to associate with you," she says of people who are HIV-positive. "Not your friends, not your family, nobody. They will think I came here and started misbehaving. Then they will make me an outcast."
Juma's fear extends even to other people who are HIV-positive. She and her husband have been encouraged to join a support group for African immigrants in Minnesota living with the disease, but they are reluctant to attend. "We've never gotten the courage to go there," she says. "We just keep it to ourselves. When you tell it to other people, it will just turn out so bad for you."
Juma's predicament has become distressingly common in Minnesota in recent years. According to the Minnesota Department of Health, 21 percent of all new HIV cases in the state in 2003 were among African-born residents. Of the 266 new infections identified, 55 were among African immigrants. The numbers are particularly striking when you consider that such residents make up less than 1 percent of the state's total population.
As in Africa, women are disproportionately affected by the disease. In 2003, women represented just 24 percent of all new AIDS cases in Minnesota. By contrast, among African immigrants, just over half of reported new infected individuals were women.
"It was kind of shocking to find out that the results here in Minnesota mirrored what was happening back in Africa," says Nyango Melissa Nambangi, executive director of the Minnesota African Women's Association, a Minneapolis-based nonprofit group that has created HIV-prevention efforts aimed at African immigrants. "It was very scary to us."
For years, health officials and AIDS activists had been alarmed by the surge in HIV cases among black Minnesotans. Between 1990 and 2000, the segment of new infections represented by black residents exploded from 10 to 38 percent. But in 2001, as the number of African immigrants in the state skyrocketed, the Minnesota Department of Health created a separate category for such residents. What the agency found was striking: African immigrants accounted for 16 percent of all new HIV infections. In fact, while there continued to be a disproportionate number of African Americans afflicted with the disease, the results indicated that the epidemic had actually plateaued among native-born blacks.
It's inevitable that some African immigrants who move to Minnesota will be infected with HIV. Over the last 15 years the disease has ravaged the continent. AIDS is by far the leading cause of death in sub-Saharan Africa, with roughly 25 million people thought to be HIV-positive. It is estimated that 15 million people on the continent have already died of the disease, with the death toll rising by more than two million each year. Life expectancy has plummeted to 47 in sub-Saharan Africa. By 2010, many countries in the southern part of the continent are expected to see average life spans of under 30 years.
While the virus has not had nearly that kind of catastrophic impact in Minnesota, responding to the HIV epidemic among African-born residents has proven difficult for health care practitioners and AIDS service providers. The disease carries a heavy stigma in many African cultures. Upon being diagnosed, African immigrants are often ostracized and rejected by their friends and families. This is in large part owing to ignorance about how the disease is transmitted, with people fearing that they will be infected through routine daily interactions.
But perhaps more than any other factor, effective prevention and treatment efforts directed at African-born residents have been hindered by the lingering perception that HIV remains a death sentence. People don't want to get tested, even if they suspect that they may be infected, because they don't believe anything can be done for them. In many ways the epidemic among African immigrants is reminiscent of the late '80s and early '90s, before the advent of antiretroviral drugs transformed HIV into a largely manageable disease. AIDS experts fear that African immigrants will suffer--and perhaps die--needlessly because of this lack of knowledge.
"There's no reason why they should die silent here," says Elizabeth Namarra, HIV/AIDS project consultant at the Minnesota Department of Health and a native of Ethiopia. "In Africa we understand [that] if they get tested positive, there's nothing they can do anyway. There's no treatment available. But here everything is available to them."
In 2003 the Somali Health Project, with the help of a grant from the Minnesota Department of Health, began conducting HIV-prevention workshops around the Twin Cities. The nonprofit group reached out to Somali enclaves in Eagan, Burnsville, Owatonna, and the Cedar-Riverside neighborhood of Minneapolis.
At the start of each workshop, participants were asked to fill out a survey to test their knowledge of HIV/AIDS. The results showed a disquieting ignorance about how the disease is transmitted. For example, 64 percent of workshop participants believed that HIV solely afflicts homosexuals, while some 81 percent thought that they could catch the disease by sharing a plate with someone who is infected. The respondents fared little better when asked about treatments. More than a third erroneously believed that there is a vaccine for HIV, while 38 percent indicated that vitamins could be taken to stave off infection.
"They thought that the disease was not for Muslims and not for Somalis," says Abdirizak Mohamed, executive director of the Somali Health Project. "People believe this disease is not for them. We have to convince them this disease is for everyone."
The questionnaire results indicate the acute need for effective HIV prevention efforts in African communities. "There are a lot of misconceptions," says Dr. Bosola Akinsete, a native of Nigeria who treats many HIV-infected African patients at Hennepin County Medical Center. "There's a lot of ignorance. We really need to conquer the misconceptions about the disease."
Part of the difficulty in providing effective prevention programs is that African immigrants are often resistant to even talking about the issue. Elizabeth Namarra, of the state health department, recalls that when she first began discussing the risks of HIV infection a few years ago, people weren't receptive. "I remember people getting up and leaving as soon as they heard the word "HIV" from my mouth," she says. "Some would say, 'This is not our concern. We don't have it in our community. We are religious. We don't have a problem.'" Namarra notes that initially more than half of the literature she passed out at community forums would be left behind on the floor.
Successful prevention efforts have also been stymied by the subordinate position that women often hold in African households. Many women who grew up in Africa didn't have access to higher education and remain financially dependent on their husbands. Too often women view themselves as powerless to refuse their husband's sexual demands. "There is a cultural norm where the African women have to be subordinate to their husbands," says Ephraim Olani, executive director of Sub-Saharan African Youth and Family Services, a St. Paul-based nonprofit group. "They don't have a right to negotiate about sex. They don't have the right to demand that the husband use a condom." Compounding the problem is the fact that polygamy is widely accepted in many African countries, therefore increasing the odds that an infected man will spread the disease to multiple women.
People who are already infected with the disease face even more daunting issues. HIV-positive African residents must deal with pervasive ostracism. It is not uncommon for people who test positive to be deserted by their spouses or kicked out of their homes.
As a result, people avoid getting tested in the first place. They'd rather live in ignorance than face the prospect of being rejected by friends and relatives. Unfortunately, such denial only exacerbates the problem by putting more people at risk of infection. It also makes it difficult to get an accurate gauge of how many African immigrants are HIV-positive.
"The only time people get tested is when they have symptoms, when they are very ill," says Dori Makundi, who works on issues affecting African immigrants at the Minnesota AIDS Project. "For sure there are a lot more people infected than have been tested."
As a result of this reluctance to be tested, many African-born residents don't receive any treatment until the disease has already wreaked havoc on their bodies. Dr. Akinsete, of HCMC, says that of 178 HIV-positive African immigrants treated at the hospital, 42 percent already had T-cell counts below 200--the generally accepted threshold for full-blown AIDS--when they were diagnosed.
Such patients can still be successfully treated with antiretroviral drugs, but in some cases their T-cell levels will never recover. This means that they will continue to have weakened immune systems and to be at high risk for opportunistic infections such as pneumonia and toxoplasmosis. "When you're less than 200, you're increasingly prone to those infections," explains Akinsete. "It's better not to have a low T-cell count."
Even when African-born clients do seek medical help, providing effective treatment can be tricky. In the past, the vast majority of HIV infections in the United States have been of the class known as subtype B. But there are numerous other subtypes of the HIV virus present throughout the world, each with distinct characteristics. African patients can be infected with any of several subtypes of the disease. This has raised some concerns among doctors that the virus will not respond favorably to medications that have been effective in treating subtype B patients.
Dr. Keith Henry, who has been treating HIV-positive clients in the Twin Cities for two decades, says that so far African patients seem to be reacting positively to existing therapies. But he warns that little research has been done on strains of the virus other than subtype B. "The knowledge base is incredibly minimal," he says.
African immigrant patients can also prove bewilderingly complex to treat for reasons that have nothing to do with medicine. Dr. Henry notes that he recently saw a first-time AIDS patient at HCMC who had just arrived from a central African country. The woman's family had not known of her status prior to her arrival and now wanted to send her back to Africa. Compounding this difficult situation, the woman was deaf, didn't understand English, and was unfamiliar with Western medicine.
"She'd never taken a pill," notes Henry. "We're dealing with almost impossible situations that are popping up all the time. There's no cookbook for this stuff."
Henry eventually persuaded the woman's family members that they weren't at risk of being infected just by having an HIV-positive person living in their house. He's now beginning to treat the woman, starting her off on fairly simple medications such as vitamin pills and antibiotics. "Rome wasn't built in a day," he says. "We have a lot of work to do."
On a Saturday afternoon in mid-December, roughly 200 people are gathered in a gymnasium at the Brian Coyle Community Center in the Cedar-Riverside neighborhood of Minneapolis to commemorate African World AIDS Day. The first-time event is intended to highlight the HIV crisis facing Africans around the globe.
An impressive array of politicians and health experts are on hand. U.S. Senator Mark Dayton stops by to address the crowd, as does State Health Commissioner Dianne Mandernach. Congresswoman Betty McCollum receives a standing ovation for an impassioned speech detailing the devastation AIDS has brought to African countries from Senegal to South Africa.
But the most significant speeches of the day are delivered near the end of the event by two people with little political clout. A jovial 48-year-old HIV-infected grandfather originally from Tanzania tells the audience that the disease he initially thought would kill him is now largely under control. "Thanks to the services that are available here in Minnesota, I've been given a new lease on life," he says. "We should not be fighting people with AIDS. We should be fighting the AIDS pandemic."
He's followed at the microphone by Siona Nchotu, a Cameroon native and mother of six. She urges the crowd to get tested for HIV. "I waited until the last moment because I did not know," she says. "We are not back in Africa where we don't have the facilities. We are in America."
Back in 2001, when the scope of the AIDS epidemic among African-born Minnesotans first became evident, such public witnessing about the impact of HIV was unheard of. In fact, a gathering such as the African World AIDS Day event would have been impossible. Nobody would have shown up.
"Two years ago it was hard to speak about HIV/AIDS in public," says Ephraim Olani, of the Sub-Saharan Africa Youth and Family Services, which helped put the conference together. "Even though the stigma is still there, there is a big change."
Over the last three years, prevention and treatment efforts have begun to reach African residents. Large, established AIDS-service organizations, such as the Minnesota AIDS Project, have hired African-born staff members to more effectively reach out to the community. HCMC, in partnership with the African American AIDS Task Force, now has African-born social workers on duty five days a week in order to educate people who have been diagnosed with the disease about the services available to them. And the state health department has dispensed $100,000 over the last two years to 18 nonprofit organizations serving the African community for outreach programs.
The Minnesota African Women's Association, for instance, received $6,000 from the state to work on HIV prevention. The nonprofit organization used the money to conduct a survey of African residents assessing their perceptions of safe sex and HIV transmission. The group then created an educational brochure to distribute to various churches, social service agencies, and businesses that serve the African community. Along with basic information about how HIV is spread, it incorporates various proverbs from different African cultures. "When a lion comes into your village, you must raise the alarm loudly," the front of the pamphlet warns.
According to Nambangi, the group's executive director, some 2,500 copies of the brochure, printed in English, French, and Oromo, have now been distributed. "All the AIDS providers in town have it," she notes. "Some churches requested it, some pharmacies."
Such efforts have started to make modest inroads against the stigma surrounding HIV infection in African cultures. In the past year, Siona Nchotu, the woman who addressed the conference at the Brian Coyle Community Center, has spoken publicly numerous times about living with HIV. Back in 2002, before she was diagnosed with the disease, Nchotu says she was on the verge of death. She recalls that at one point it took her two hours to walk the three blocks from her home to Abbott Northwestern Hospital for a doctor's appointment. At the time, she believed she was suffering from some kind of lung infection. After arriving at the hospital she went into a coma that lasted five days, and she was diagnosed with HIV. Her T-cell count was virtually nonexistent. A Pentecostal Christian, she credits the mercy of God as much as medical science for saving her life. "With God all things are possible," she says.
When Nchotu initially returned home from the hospital after learning of her diagnosis, even her own children avoided her. "They were afraid," she relates. "I believe it was ignorance. They were not well-informed. When they first learned I was infected, they got mad."
Nchotu says that she decided to go public with her story in order to prevent other people from dying needlessly. Prior to leaving Cameroon, she lost family members to the disease. She is currently raising money to return to her homeland next year and speak about living with HIV.
"The stigma is an issue that we have to fight and get rid of," she says. "HIV is just a disease like any other disease. You can still get married. You can still have children. It's a disease just like any other disease."
In the months after Maria Juma initially tested HIV-positive, her physical condition deteriorated markedly. Despite being prescribed a course of antiretroviral drugs, she became physically weak. "I could not even use the walking stick that I was given," she recalls. "My legs could not carry me anymore. I was in a wheelchair. I could not put myself to bed. I could not do anything for myself."
Juma continued to hide her condition from friends, telling them that she was suffering from a neurological disorder. Her T-cell count dropped below 200, meaning that she had full-blown AIDS. Juma believed she was going to die. Unable to work, she and her husband were forced to apply for food stamps. At one point they paid the rent and the heating bill with an emergency-assistance grant from Ramsey County. "We just prayed," Juma says. "We just prayed that God give us encouragement."
After changing doctors and switching to a new course of anti-AIDS drugs, Juma began to regain strength in April of last year. She was able to abandon the wheelchair. Her viral load dropped to nearly undetectable levels, where it remains to this day. This summer she began working again part-time as a home health aide. On most days Juma's physical discomforts are minimal. "In the morning when I get up, maybe I don't feel like doing anything and I don't have any appetite," she says.
Juma credits the combination of medicine and prayer for her recovery. "I believe God helped a lot," she says. Even so, Juma is still wary of what the future holds. Because she is in the country on a temporary visa, she could eventually be forced to return to Kenya. She's in the process of applying for permanent resident status, but is uncertain if the application will be accepted.
If Juma does eventually return to her homeland, she fears that the life-saving medications she now relies on will no longer be available. In Kenya, as in most of Africa, HIV-infection remains an almost certain death sentence. "They think your case is done," she laments. "There's no sense in wasting drugs or money on you. If I go back there, I don't know how I will survive."
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