New Report from UC Berkeley and Johns Hopkins: "The Gathering Storm"

Burma junta faulted for rampant diseases
By Yasmin Anwar, Media Relations 28 June 2007

BERKELEY – As Congress debates extending political and economic sanctions against Burma's military regime, a new report from the University of California, Berkeley, and Johns Hopkins University documents how decades of repressive rule, civil war and poor governance in the Southeast Asian country have contributed to the spread of HIV/AIDS, tuberculosis, malaria and other infectious diseases there.

Extreme travel restrictions imposed by the Burmese government have forced Médecins San Frontières (Doctors without Borders) in France and the multinational Global Fund to Fight AIDS, Tuberculosis, and Malaria to pull out of the country, and have severely curtailed the work of the International Committee of the Red Cross, according to the report co-authored by researchers from UC Berkeley's Human Rights Center and The Johns Hopkins Bloomberg School of Public Health.

The report was released today (Thursday, June 28), and can be viewed online.

U.S. Senators Dianne Feinstein (D-Calif.) and Mitch McConnell (R-Ky.) introduced a bill on June 15 that would extend the U.S. sanctions, set to expire July 26, against Burma because of continued human rights violations. The sanctions include a ban on imports from Burma and visa restrictions for members of the government.

While 40 percent of Burma's annual spending goes to the military, only 3 percent goes to health care, according to the report. The Burmese military junta spends 40 cents per citizen each year on health care, compared to the government of neighboring Thailand, which spends $61 per citizen a year, the report says.

"Military expenditures should be reallocated to support health care delivery," said Eric Stover, faculty director of UC Berkeley's Human Rights Center. "Burma is not at war with its neighbors, and its security is more profoundly threatened by the rise of drug-resistant malaria and tuberculosis, and by emerging infectious diseases such as avian influenza, than from external military threats."

Stover and fellow researchers from the Human Rights Center and Johns Hopkins launched the project last year to discover the roots of Burma's dire disease epidemics and to determine whether international aid could be delivered in a way that is responsible and effective.

For the report, researchers traveled to the large Burmese city of Yangon, formerly known as Rangoon, and to Burma's borders with China, Thailand, Bangladesh and India. From health clinics in those regions, they gathered data on HIV/AIDS, tuberculosis, malaria and lymphatic filariasis, and interviewed aid officials and health care workers.

The researchers found that the widespread distribution of counterfeit antimalarial drugs, coupled with the rise of drug-resistant malaria and tuberculosis, pose a major health threat to the Burmese people, especially those living in border areas where health care is scarce, if available at all.

Burma has one of the world's highest tuberculosis rates and is home to more than half of Asia's malaria deaths. Those most vulnerable to disease epidemics there are ethnic and religious minorities, displaced farmers, commercial sex workers and intravenous drug users.

Drug trafficking has also played a major role in the spread of HIV/AIDS among intravenous drug users and commercial sex workers, the report says. In addition, aggressive campaigns by the Burmese government and the United Nations Office on Drugs and Crime to eradicate poppy cultivation and heroin production have led to the displacement of tens of thousands of families who have no alternative source of livelihood. Many have relocated to the Thailand border, where communicable diseases are thriving. Meanwhile, methamphetamine production in Burma's border regions is rising.

"Decades of neglect by Burma's military government have turned the country into an incubator of infectious diseases," said Chris Beyrer, a co-author of the report and professor of epidemiology at The Johns Hopkins Bloomberg School of Public Health. "While the health situation deteriorates, the junta continues to limit the ability of international relief organizations to reach those most in need."

In 1990, Burmese voters elected Aung San Suu Kyi, 62, as their democratic leader. But the military rejected the election results and placed her under house arrest, where she has remained for most of the last 17 years. During the 1990s, international relief organizations began responding to Burma's neglect of its citizens' health. By 2004, 41 aid organizations were operating in Burma with a combined budget of about $30 million, and tens of millions of dollars more aimed at fighting infectious diseases, according to the report.

But that changed in 2005 when Burmese government authorities imposed travel restrictions on international organizations. In October 2006, the European Union, along with Australia, Britain, the Netherlands, Norway and Sweden, launched the "Three Diseases Fund" to fight infectious diseases in Burma. Yet the fund, now worth $99.5 million, faces formidable challenges, including the critical task of ensuring that aid reaches Burma's border regions and other areas where infectious diseases are rampant and severe.

The report recommends that:

• The Burmese government develop a national health care system in which care is distributed effectively, equitably and transparently
• The Burmese government increase its spending on health and education to confront the country's long-standing health problems, especially the rise of drug-resistant malaria and tuberculosis
• The Burmese government rescind guidelines issued last year by the country's Ministry of National Planning and Economic Development because these guidelines have restricted organizations such as the International Committee of the Red Cross (ICRC) from providing relief in Burma
• The Burmese government allow the ICRC to resume visits to political prisoners without the requirement that ICRC doctors be accompanied by members of Burma's Union Solidarity and Development Association or by other junta representatives
• The Burmese government take immediate steps to halt in eastern Burma the conflicts and human rights violations that are displacing an unprecedented number of people and facilitating the spread of infectious diseases in the region
• Foreign aid organizations and donors monitor and evaluate how aid to combat infectious diseases in Burma is affecting domestic expenditures on health and education
• Relevant national and local government agencies, United Nations agencies and non-governmental organizations establish a regional narcotics working group that would assess drug trends in the region and monitor the impact of poppy eradication programs on farming communities
• These agencies also collaborate more closely, sharing information, to lessen the burden of infectious diseases in Burma and its border regions, and to develop a regional response to the growing problem of counterfeit antimalarial drugs.

Op-ed Trifecta

by Clara Presler

(New York City, June 18, 2007)--Three articles over the weekend cover a range of themes within the AIDS crisis—global aid, government sanctions, clean needle exchange—and converge in their call for increased government responsibility in the global effort to curb the epidemic.

Looking towards the fiscal 2008 appropriations bill, the New York Times calculates that the G8 pledge of $60 billion is actually a “retreat from previous goals”. Past G8 meetings have resulted in a declaration for universal access to treatment; this year, the group set its goal at treating only 5 million individuals in Africa. The editorial calls on the US government to increase its spending: “Congress should set the nation—and, by its example, the world—on course towards universal access to AIDS treatment by 2010.”

Considering whether the US should continue its sanctions against the Burmese military junta for its human rights abuses, or address the deterioration of its citizens’ health—and increase of HIV/AIDS prevalence—with humanitarian aid, the Boston Globe looks at how the Burmese government has spent its own money. While the rulers claim that there is not money to address health care, they have spent extravagant amounts on buildings, weapons, and nuclear agreements. The editorial says enough is enough: “Increases in humanitarian assistance are clearly necessary—but so are increases in political pressure…Now is not the time to reward the generals for their brutality [and] mismanagement…Bush is right to continue sanctions against the generals, and Congress should support this position.”

On the domestic front, the Chicago Tribune looks at a bill in the House of Representatives that would let the people of Washington, DC decide whether to sponsor clean needle programs. At the moment, DC cannot use their own local funds for such programs; no federal funds can go to them either. Such regulations cost money and lives; a sterile syringe costs a quarter, while supporting someone with AIDS costs about $25,000 a year. Numerous scientific institutions have affirmed that needle-exchange programs work without negative consequences. The commentary has a message for Congress—look at the evidence: “Restrictions on the sale and possession of injecting equipment, like the funding bans, make it harder for drug users to take basic self-preservation measures. If you like throwing away money, preventing addicts from getting access to sterile syringes is an excellent strategy. If you like squandering lives, it’s even better.”

Lately, much celebration has been paid to the Bush administration for pledging more money to PEPFAR. These 3 articles look beyond those headlines towards sustainability. Raising the bar, they call for an increase of governmental responsibility. Here are three ways that the US government can begin to meet the bar, both domestically and internationally.

World Bank: Not one approach, but many

The World Bank released a report yesterday entitled The Africa Multi-Country AIDS Program 2000-2006: Results of the World Bank’s Response to a Development Crisis. Advocating locally approapriate approaches to tackling the AIDS epidemic, it says, "the mobilization of empowered 'grassroots' communities, along with delivering condoms and life-saving treatments, are beginning to slow the pace of the continent's epidemic."

The articulated goals of the World Bank's Multi-Country AIDS Program have been to:
(1) to build strong political and government commitment to responding to HIV;
(2) to create a conducive institutional and resource-appropriate environment in which successful HIV/AIDS interventions could be scaled up to a national level;
(3) to make the HIV/AIDS response local—increasing community participation and ownership in HIV/AIDS interventions by providing financial resources and capacity building; and
(4) to move to a multisectoral approach involving all government sectors, with improved coordination at the national level and decentralization to subnational government structures.

Michel Kazatchkine said of the program, "It (MAP) was a precursor because of its specific objective of supporting civil society, which we know is a key component of the response against HIV/AIDS. In addition, the World Bank is in a privileged position to bring in the fight against HIV/ADS within the frame work of the fight against poverty and the fight for development and for promoting health in development."

Read the report and press release.

The Basics on PEPFAR

by Clara Presler
Recent developments on the President's Emergency Plan for AIDS Relief (PEPFAR)
(New York City, June 12, 2007)--In 2003, President Bush introduced the President's Emergency Plan for AIDS Relief (PEPFAR), a plan that allocated $15 billion over 5 years to AIDS relief in 15 countries hardest hit by the epidemic. Last Wednesday, May 30th, Bush announced that he would reauthorize this spending and boost the amount to $30 billion over the next 5 years starting in September 2008.

While PEPFAR has been instrumental in providing treatment to some 1.1 million people since 2003, heavy controversy surrounds the myriad restrictions that are placed on the funds and the specific earmarks. Additionally, increases in the number of people on treatment are being far outstripped by those becoming infected. For example, in sub-Saharan Africa for each 1 person put on treatment in 2005, 5 became infected. This means that, while Bush has doubled the overall funds, per capita spending on HIV-positive individuals will likely remain flat or even decline.

Currently under PEPFAR, 55 percent of funds must go to treatment and 10 percent must go to programs targeting orphans. Twenty percent of the funds go towards for HIV prevention and Congress requires that 33 percent of prevention funds be spent on abstinence-until-marriage programs (the remaining 15 percent goes to palliative care). As a percentage of money spent specifically on prevention of sexual transmission, close to two-thirds is spent on abstinence-only education. This requirement has been shown to divert finds away from other methods of HIV-transmission prevention, for example prevention of maternal-to-child transmission and prevention targeting injecting drug users.

Looking ahead to the next years of PEPFAR, advocacy organizations are working to see that the restrictions on prevention programs will be lifted and replaced by programs that are evidenced-based and fulfill the right to information, and that better respond to the factors making women vulnerable to HIV infection. Such programs include prevention of mother-to-child transmission, comprehensive sex education, and programs addressing property rights and domestic violence.

Another area of advocacy relates to US government policy which does not allow funding for clean needle exchange programs. These are needed in much of Asia and Eastern/Central Europe and specifically in places like Vietnam (a PEPFAR country) where the majority of HIV-transmission occurs through injection drug use. Other groups, including HealthGap and Physicians for Human Rights are pushing for attention to increasing health personnel (training and retention). Jose DeMarco of HealthGAP said, "Fighting AIDS in Africa without addressing the health worker crisis is like treating a massive hemorrhage with a handful of bandaids. PEPFAR must spend money to train and deploy new health workers and pay the providers who are at the heart of any successful AIDS response."

One step towards these goals is the bipartisan PATHWAY Act of 2007 (Protection Against Transmission of HIV for Women and Youth Act of 2007), introduced by Congresswoman Barbara Lee and Congressman Chris Shays that is currently up for consideration. This act would strike the abstinence-only earmark and further require the President and the Office of the Global AIDS Coordinator (OGAC) to establish a comprehensive and integrated HIV prevention strategy to address the vulnerabilities of all women and girls to HIV infection.

Decisions around PEPFAR are moving quickly: just last week, the 5th of June, The House State and Foreign Operations Subcommittee marked up the appropriations bill in a manner that reflects our concerns with US foreign aid, including the recommendation that an option to waive the abstinence-until-marriage earmark be included. The next vote on this will take place this week.

MORE INFORMATION:

President Bush’s announcement of May 30th
New York Times: Bush Seeks to Double Spending for AIDS Program
Washington Post: Bush to Seek Extension of AIDS Effort

Analysis
The Government Accountability Office (GAO) April 2006 report,
The Institute of Medicine (IOM) March 2007 report
PEPFAR Watch

China: Activist Couple Accused of Endangering State Security

Just months after 79-year-old AIDS activist Dr. Gao Yaoji was detained by Chinese officials and temporarily prohibited from traveling to the US to accept an award, the young Chinese AIDS activists Hu Jia and Zeng Jinyan were arrested on Friday, May 18.

Charged with "harming state security" for their work on behalf of people living with HIV/AIDS, Zeng Jinyan began a blog to document their experiences with the police. Her accounts have captured the world's attention, not least on other blogs.

Below are links to blogs that have followed Hu and Zeng's experiences, along with Human Rights Watch's May 21st press release.

Human Rights In China Blog; My Blue Notes; Talk-Share-Learn

House Arrest, Travel Ban Arbitrarily Imposed on Couple Without Formal Charges

(New York, May 21, 2007) – The Chinese government should immediately lift the house arrest and travel restrictions imposed on Hu Jia and Zeng Jinyan, a prominent husband-and-wife team of human rights activists arrested on Friday, Human Rights Watch said today.

Hu and Zeng, two of China’s most well-known campaigners for the rights of people living with HIV/AIDS, were placed under house arrest and banned from leaving the country on May 18. During a four-hour interrogation at a Beijing police station, police told Hu that the couple was “suspected of harming state security.”

“The Chinese government ought to be grateful to Hu and Zeng for educating and assisting people living with HIV/AIDS, but instead it is punishing them,” said Brad Adams, Asia director at Human Rights Watch. “Their work isn’t a threat to national security, but the government’s attempt to stifle AIDS activists is a threat to public health.”

Minutes before the couple was to board a flight for a two-month trip to Europe, Hu and Zeng were detained by eight police officers – two of whom filmed the proceedings. The police at no point provided any official documents showing the basis for Hu and Zeng’s house arrest and travel ban.

Hu, a human rights activist who has monitored and reported on arrests and harassment of high-profile individuals, spent 214 days under house arrest between August 2006 and March 2007. The couple made a documentary film about their house arrest, “Prisoners of Freedom City,” which records their surveillance by state security and police over that seven-month period.

Last week, Time magazine named Zeng as one of the world’s 100 most influential people. Her

blog documents the routine surveillance and harassment by security forces that China’s activists and dissidents must endure. “I had never expected that the police would restrict me as well as Hu Jia,” Zeng wrote on her blog. “I am already three months pregnant. What is to be feared from me and my child?” She expressed her astonishment that the authorities would subject both her and her husband to house arrest for legally pursuing their rights of free expression and association.

In April, Hu released a transcript of a conversation he had with a prominent human rights lawyer, Gao Zhisheng, in which Gao claimed that he had been forced to “confess” under torture. Gao received a suspended sentence in December for a charge of “subversion” in a trial that fell short of international fair-trial standards.

The house arrest order confines Hu and Zeng to their home in Beijing and severely limits their freedom of movement and association, as well as their ability to contact friends and relatives. “China’s systematic use of house arrest and state security charges against human rights defenders seriously undermines the government’s claims that it respects the rights of its citizens,” said Adams. “The Chinese government should immediately end the practice of house arrest and the use of dubious, politically motivated charges against activists.”

House arrest is just one of the many administrative measures that Chinese authorities can deploy against dissidents and human rights activists without having to formally charge and prosecute them under Chinese law. The Chinese government appears to be increasing its use of house arrest on grounds of loosely defined state security crimes as a means of quelling public expressions of dissent in the run-up to the Beijing 2008 Olympic Games.

Hu stated earlier this year that he was planning to “push the space for freedoms, especially freedom of expression,” in the period leading up to the Beijing Olympics in August 2008. But with a spate of arrests of activists, lawyers and journalists in the past two years, China is moving in the opposite direction. Despite its recent, more forceful response to the AIDS epidemic, the authorities have also repeatedly harassed AIDS activists, most recently detaining 79-year-old Dr. Gao Yaojie in February.

“With the Olympics on the horizon, Beijing should know that its actions are being closely watched by the rest of the world,” Adams said. “Is the house arrest of two internationally known activists really the image that China wants to project to the world?”

More information about Hu Jia and Zeng Jinyan:

TIME: 100 Most influential people

Enemy of the State: Guardian Unlimited

China: Activist Couple Accused of Endangering State Security: Reuters

2 Activists Are Under House Arrest and Barred From Leaving China: New York Times

More information about AIDS activists in China
China: House Arrests Stifle HIV/AIDS Petitions
Restrictions on AIDS Activists in China
Hold Beijing to Account for its AIDS Coverup
Chinese AIDS Activist Honored Despite Ongoing Detention
By Choking Information, China Worsens AIDS Crisis

Curb HIV infection rates in Texas prisons

May 10, 2007 in the Statesman

"The Bible people come to the prisons once a month. Let the condom people come in once a month. The purpose is the same — to save lives." Last month, Texas State Representative Garnet Coleman (D-Houston) spoke these words to the House Committee on Corrections in support of his bill permitting community organizations to distribute condoms in Texas prisons.

In the United States, more than two-thirds of all new HIV infections occur among minorities. And because of the increasing imprisonment of drug users, and the disproportionate incarceration of minorities, the number of people with HIV or AIDS behind bars in the U.S. is more than three times higher than in the general population. Although most inmates acquire the infection outside of prison, some transmission occurs inside.

Coleman is concerned about the health of inmates, but he explained to the committee that much of the impetus for this bill arises out of the high rates of HIV infection among Latina and African American women. In Texas, some 12 percent of the population is African American. Yet among those living with HIV about 38 percent are African American. African American and Hispanic women combined represent 78 percent of women living with HIV in Texas. Coleman told the committee that making condoms available might lower the HIV transmission rate in prison and, in turn, lower the infection rate in the community as the inmates return home.

Coleman is right about the alarming rates of HIV infection in minority communities. And he's right that condom distribution will decrease transmission in prisons. Distributing condoms is a low-cost, practical public health measure that needs to be more widely implemented in U.S. prisons and jails. New York City, Washington, D.C., San Francisco and Los Angeles are some of the cities already distributing condoms in their jails, and the distribution of condoms to inmates has been endorsed by the National Commission on Correctional Health Care and the American Public Health Association.

However, sexual transmission is not the only way HIV is spread in prisons. Injection drug use and unsafe tattoos contribute to transmission, and strictly supervised programs providing prisoners with methadone, bleach, and clean needles have proven both effective, and safe, in such countries as Switzerland, Spain and Germany.

But it's important to note that minority women are not primarily at risk because of HIV transmission in prisons. Unemployment, housing discrimination, the lack of access to quality prevention and medical services, and the on-going stigma which surrounds HIV all fuel the epidemic.

And that's why Coleman's second bill on HIV in prisons is ineffective, and ultimately counterproductive. The bill would mandate HIV testing of all inmates and segregate those found to be HIV positive. These policies are not necessary, nor do they respect the civil rights of inmates. Informed consent is a cornerstone of legal and ethical medical testing requirements, and inmates, while losing certain rights to liberty, do not leave all of their rights at the jailhouse door.

Voluntary HIV counseling and testing can increase knowledge and impact HIV-related behaviors more than mandatory programs. The segregation of inmates with HIV perpetuates stigma, isolation and discrimination, undermining efforts to address the epidemic both in prison and out.

Despite the U.S. government's pledge in 2001 to cut the number of new HIV infections in half by 2005, more than forty thousand people in the U.S. continue to become infected with HIV each year. Much of what has stopped us from fulfilling that pledge is a willingness to cling to ideology rather than recognize reality. Rather than just inviting "condom people" into its prisons, Texas needs to implement public health programs that expand HIV information and services both inside and outside prisons, and respect the rights and the dignity of everyone living with HIV.

Joe Amon and Megan McLemore, Human Rights Watch

Woman AIDS activist nominated for Nobel Peace Prize

This week Patricia Perez became the first HIV-positive woman to be nominated for a Nobel Peace Prize. An activist from Argentina, she is the regional representative of the International Community of Women Living with HIV/AIDS in Latin America (ICW Latina). Her nomination was announced in Mexico City.

In the last three years, the prevalence of HIV among Latin American women has risen considerably. According to the United Nations Population Fund (UNFPA), three years ago there were seven or eight men with HIV/AIDS in Latin America for every woman with the virus. But today the ratio is three to one.

Since she was diagnosed in 1986, Patricia Perez has been a powerful voice in Latin America, an advocate for the rights of women living with HIV/AIDS in her region.

More about Patricia Perez:

ICW Latina

IPS: HIV-Positive Women Activists in Latin America Stand Tall

HIV Infection Rates Among Women in Latin America and the Caribbean Continue to Increase

Interview with Patricia Pérez, Candidata al Premio Nobel de la Paz (Spanish)

Debate: Global Public Health

The Challenge of Global Health by Laurie Garrett, Foriegn Affairs, January/February 2007
Thanks to a recent extraordinary rise in public and private giving, today more money is being directed toward the world's poor and sick than ever before. But unless these efforts start tackling public health in general instead of narrow, disease-specific problems -- and unless the brain drain from the developing world can be stopped -- poor countries could be pushed even further into trouble, in yet another tale of well-intended foreign meddling gone awry...


Responses:
Nancy Aossey, International Medical Corps
To the Editor:
As head of an organization that has struggled for over two decades with the challenges Laurie Garrett raises ("The Challenge of Global Health," January/ February 2007), I know that making a lasting impact on the health of the world's poor is fraught with difficulties. No issue is more pressing than the work-force crisis in local health sectors, because it ultimately erodes the very same local structures that are essential for sustainable progress....

Joe Amon, HIV/AIDS Program, Human Rights Watch
To the Editor:
Laurie Garrett makes it painfully clear how shortsighted and dysfunctional our response to the global health crisis has been to date.
Garrett correctly points out that it will take more than money to make an impact on global public health, and she correctly states that unless we start tackling public health in general instead of narrow, disease-specific problems, we may end up worse off. But while her diagnosis is on target, her prescription misses the mark, because she misses the most basic factors underlying not only successful health infrastructures but also successful prevention programs and a successful health industry: good governance and a respect for human rights...

Susan L. Erikson, Global Health Affairs, University of Denver
To the Editor:
I have been following with great interest Foreign Affairs' discussion about Laurie Garrett's article on global health. But I am struck by the irony that a distinguished journal of foreign relations has completely missed such an important point: today's global health lacuna is political. We simply do not have people who are knowledgeable and experienced enough in foreign policy engaging in the politics of global health...

Towards Universal Access: Scaling up priority HIV/AIDS interventions in the health sector

Last week the United Nations, UNAIDS, and WHO launched a new report focusing on access to treatment for people living with HIV/AIDS in low and middle income countries. The findings were mixed: although treatment in these countries increased 54 percent over 2005, coverage in general is patchy and inadequate. And the UN's stated goal of achieving universal access by 2010 is now only 3 years away.

Indeed, the numbers reflecting need are alarming. The report, appropriately named Towards Universal Access, shows that:

• last year only 11 percent of HIV-positive pregnant women were receiving treatment to prevent transmission to their children;
• only 15 percent of children in need of treatment had access to it;
• there are 5 million people in low- and middle- income countries who still need treatment.

The report pitches a few recommendations to overcome these statistics. Some examples:

• More attention to mothers and children;
• More attention injecting drug users, an emerging problem in Africa;
• Control of sexually transmitted diseases to prevent HIV transmission.

Toward Universal Access also lingered on the cost of drugs; the report comes at a time of heated debate between Abbott Laboratories and Thailand’s Ministry of Health. In early 2007, Thailand issued a compulsory license for Kaletra, prohibiting its patent. Abbott tried to assuage the government by offering Kaletra at a reduced price. When Thailand maintained its compulsory license, Abbott retaliated by offering a different version of the drug, Aluvia, to other developing countries at a reduced price. Just yesterday and after much criticism, Abbott changed its stance and agreed to offer Aluvia in Thailand at a reduced price, approximately $1000/person/year.

This concession has the potential to embolden other developing countries to take advantage of the compulsory license option of the TRIPS agreement and obtain second-line ARVs at a more affordable price.

As Toward Univeral Access states:

“With some exceptions in certain low-income countries the average prices paid for second-line regimens remain unaffordably high in low- and middle-income countries, where few or no prequalified generic alternatives are available.”

It further points out that access to second-line drugs in developing countries is completely disproportional to their financial abilities:

“…An average price of US$ 1600 per person per year is paid by South Africa for tenofovir + abacavir + lopinavir/ritonavir, whereas El Salvador pays US$ 7613 per person per year for the same regimen.”

The Abbott Laboratories/Thailand story was a small victory towards increasing access. But, as Lancet pointed out last week, it was achieved only after advocacy groups heavily pressured the WHO to be more aggressive with Abbott. Reliance on case-by-case advocacy efforts is not sufficient, either to convince pharmaceuticals to lower their prices or to empower governments to take advantage of their right to provide generic drugs.

To this end, Towards Universal Access issues a warning:

“Unless prices for second-line regimens fall significantly, countries will soon be confronted with budgetary constraints that may put treatment programmes at risk. It is vital to achieve further reductions in the prices of second-line drugs and to obtain more second-line generic alternatives.

Lancet offers a first step: "WHO can do more. Developing a robust plan on access to second-line drugs in collaboration with its partners...would be a good start. Such a move would show that WHO is serious about defending the interests of patients with HIV/AIDS."

World Bank: New Policies Backslide on Family Planning

Continued Support for Access to Contraceptives, Safe Abortion Crucial to Development

(New York, April 16, 2007) – By failing to explicitly support continued access to family planning and contraception, new World Bank policies, as drafted, would undermine a key strategy in the fight against global poverty, Human Rights Watch said in a letter to the bank’s board of directors.

“Women’s lack of control over their own fertility keeps millions of them mired in poverty,” said LaShawn R. Jefferson, women’s rights director at Human Rights Watch. “If the World Bank is serious about ending poverty, it needs to enhance women’s ability to make independent choices about having children.”

Traditionally, the World Bank has supported broad reproductive health programs as part of its population policy, but recent developments at the bank raise concerns about its continued support for this strategy. Last week, World Bank staff told reporters that the bank’s managing director, Juan José Daboub, ordered them to remove all references to family planning in a country package requested by Madagascar. Paul Wolfowitz, the president of the World Bank, subsequently denied that the bank was changing its policy on reproductive health, but did not affirm the bank’s support for access to contraception and comprehensive sex education.

A draft World Bank strategy paper on health and population leaked in early April recognizes that population growth is a significant challenge to developing countries’ ability to provide access to basic services. But unlike earlier documents, including the World Bank’s World Development Report of 2007, the draft fails to make explicit reference to the need for access to sex education and contraceptives. This omission would allow for the kind of measures taken on the Madagascar country package. The bank’s board of directors will reportedly review the strategy paper on April 17 and 18.

“The bank’s draft strategy paper fails to give people the key tools they need to participate actively and as equal partners in society,” said Joseph Amon, director of Human Rights Watch’s HIV/AIDS and human rights program. “This week, the World Bank’s board of directors must correct that omission.”

"Salud" the movie playing in New York on April 19th

WHO speaks out on health security on World Health Day

"Invest in health, build a safer future", the WHO said in a new publication honoring this World Health Day, April 7^th. In the face of rising temperatures and globalization, the international health organization looks to the increasing threats to health. The publication outlines its primary focus areas:

1. Emerging diseases;
2. Economic stability’s effect on mobility of people and goods, and consequently diseases;
3. Humanitarian emergencies, for example Hurricane Katrina;
4. Biological and chemical terror threats;
5. Climate change;
6. HIV/AIDS;
7. Building health security;
8. Strengthening health systems.

The WHO continued, saying, after the Security Council met to discuss HIV/AIDS in 2000, “public health was no longer seen as irrelevant to security or as its by-product; it had become its essential ingredient.”

The call was echoed by many around the world. Dattatreya Bant, a professor of community medicine at Karnataka Institute of Medical Sciences explained the specific links between health security and health to the Times of India: "They include sudden shocks to health and economies from emerging diseases, like SARS (severe acute respiratory syndrome) and avian influenza, humanitarian emergencies, bio-terrorism and other acute health risks."

Bant also commented on the challenges to health common across the world: "The shortage of safe drinking water and its impact on health and security after hurricane Katrina in USA, and the tsunami in Asia, clearly demonstrate the importance of advance preparation and the ability to respond quickly."

An editorial in The Rising Nepal commented, “As defined by the WHO, health is a state of complete physical, mental and social wellbeing, and not merely an absence of diseases or infirmity”. It went on to emphasize the commitment that is necessary to achieving this wellbeing:

“There are political and institutional obstacles to optimally utilizing these trained human resources in their actual field of interest and expertise…There is no doubt that an effective public health workforce is extremely important to improving the health system …It is increasingly realized that this requires a substantial commitment to a new and creative approach from all countries and donor agencies.”

“Shackles” or “budget allocations”?

On March 30, the Institute of Medicine released a report called, “PEPFAR Implementation: Progress and Promise” which evaluates the initiative’s progress over the last three years. The interpretations of this report have been as mixed as those of the controversial initiative itself:

The New York Times focused on the IOM’s assertion that the fight against AIDS is “hampered” by certain restrictions in the plan, in particular:

1. the requirement that 33 percent of all prevention money be spent on teaching abstinence (and nearly 60% of all money for the prevention of sexual transmission)
2. that the FDA must approve AIDS drugs already approved by the WHO
3. that the program cannot sponsor clean needle exchange programs using taxpayers’ money.
   The article stresses IOM’s call for a more sustainable approach and less emergency response, and ends with the critical fact that at the half-way point of PEPFAR, the program has not met its goals.

The Boston Globe also focused on the obstacles to the US effort to fight AIDS, citing the funding restrictions and the report’s call for greater emphasis on prevention.

The Washington Post took a more positive slant, referring heavily to the reports statements that the program has made a “strong head start” and PEPFAR’s success at treating pregnant women, but also cites the report’s call for less prescriptive budgeting.

So does the IOM’s report “please almost everyone” as the Washington Post says?

Mark Dybul, who oversees the implementation of PEPFAR, was thrilled, welcoming the report as “an endorsement of our program”. In response to the critique on the prevention programs he said “There is no abstinence-only provision. I wish people would stop calling it that. It’s abstinence until marriage.”

According to the New York Times Dybul also disagreed with the report that PEPFAR should pay for clean needle programs. “Needle exchange just continues the condition” Dr. Dybul said. This, of course, contradicts with the Institute of Medicine’s recent review of the effectiveness of needle exchange, and the endorsement of needle exchange programs by the AMA, APHA, the American Academy of Pediatrics and numerous other groups.

While many PEPFAR critics were glad the report highlighted a need for a less “cookie cutter” approach to HIV prevention, tailoring responses to the epidemiology and emphasizing evidence-based approaches, others felt the report pitted prevention against treatment. Gregg Gonsalves said “If one needed more evidence that the pendulum has swung away from access to treatment and back towards the pre-2000 conventional wisdom that poor people can't be and shouldn't be treated with ARVs, the New York Times article today on PEPFAR just confirms” it.

The news coverage also gave little coverage of one of the major findings of the report – that more attention must be paid to factors making women and girls more vulnerable to HIV infection, and that PEPFAR must invest greater in efforts to improve their legal, economic, educational and social status. "We are making the overall recommendation to find ways to empower girls and women and to protect them from sexual harassment and sexual violence," the panel's chairman, Jaime Sepulveda of the University of California at San Francisco, told reporters.

This recommendation led many activists to call for passage of the PATHWAY bill re-introduced by Congresswoman Barbara Lee (D-CA) and Congressman Christopher Shays (R-CT) on March 27. The bill would require all HIV prevention programs funded by the President’s Emergency Plan for AIDS Relief (PEPFAR) to address violence against women and would eliminate the earmark for abstinence-until-marriage programs (Read more).

HIV/AIDS in Honduras

Honduras is one of the poorest countries in Latin America and one of the hardest hit by HIV/AIDS. The adult prevalence rate is estimated at 1.5 percent. Only Belize, with a prevalence of 2.5 percent, has a higher prevalence in all of North, Central, or South America, according to UNAIDS.

I would like to highlight a couple places that are hard at work to curb the epidemic and improve the lives of Hondurans living with HIV and AIDS.

In 1995, Siempre Unidos ("Always United") formed as the first self-help group for persons living with HIV/AIDS in Honduras. Its scope expanded over the years and it now follows the mission of providing life-saving outpatient medical treatment, social support, and education to people living with HIV/AIDS in Honduras. It receives help from the Global Fund, the Episcopal Church, and the Honduran government and now provides free anti-retroviral treatment to hundreds of people living with AIDS in San Pedro Sula. It continues to hold support group meeting once a week for over 100 people and also provides employment opportunities for HIV-positive women at its sewing factory, SiempreSol.

Fundacion Llaves began in 1999 to assist people living with HIV/AIDS in Honduras who were unable to obtain adequate information about their condition. Upon realizing that most of the information in Honduras pertained to prevention, Fundacion Llaves’ primary mission became to disseminate information for people living with HIV/AIDS—about health, the treatment options, and human rights. To this end, Fundacion Llaves reaches out to the press, the government, and the community to raise awareness. They publish a magazine called “Llaves” and a weekly radio program “Aprende del VIH/SIDA y Gana” (Learn about HIV/AIDS and Gain). With only 8 people, the organization has made significant gains for Hondurans living with HIV/AIDS.

HIV Testing and Reproductive Choice – How Did The Rights-Based Approach Play Out?

While this reflection is of the International AIDS Conference in Toronto - the tough questions it raises remain as pertinent (and largely unanswered) today as they were 6 months ago.

Published on RHRealityCheck.org (http://www.rhrealitycheck.org)

By Maria de Bruyn
Created Aug 28 2006 - 8:20am
Any reflections on the XVI International Conference on AIDS are necessarily subjective, as each person reporting attended different sessions, had different goals and talked to different people at different times. Nevertheless, taking the various perspectives into account can give us a more comprehensive view of what transpired in Toronto.
Advocates for women’s and rights issues can rightly take pride in having focused at least some attention on topics that were relatively neglected, such as female-controlled (at least to some extent!) barrier methods (female condoms, microbicides, diaphragms and cervical caps) and violence against women.
One hot topic that was debated in formal and informal sessions was the current push by national and international agencies to have as many people tested for HIV as possible. Most people agree that knowing one’s HIV status can have many benefits, not the least of which is enabling a person to seek appropriate treatment in a timely manner (assuming that affordable treatment is available within a reasonable distance from their place of residence, of course). What concerns those who question the speed with which testing initiatives are being expanded is whether this public-health measure will be based on respect for individual human rights.
Some worry that routine offers of HIV tests by health-care providers may easily turn into routine imposition of HIV tests for patients who are not knowledgeable or confident enough to ask about the benefits and risks associated with tests. (And just think about it – how often have you asked your physician all the questions you had about a medical exam, procedure or prescription? Have you never felt just a little intimidated or reluctant to challenge or question what your doctor says? I know that it’s happened to me and my well-to-do, highly educated, empowered female friends; women raised to be subordinate will have even more problems with this.)
The growing shortage of health-care workers in many areas means that health systems don’t have adequate staffing levels to ensure that patients can give informed consent or receive counseling. Inadequate infrastructure can mean that confidentiality is not ensured as no separate spaces are available where people can receive test results in privacy. Or people’s confidentiality is breached later when they can only access antiretroviral therapy (ART) at offices labeled “AIDS Services,” “ART for adults” and “ART for children.” When women are asked to take HIV tests during labor and delivery, they will often be in a ward with others – how can protocols ensure that their consent is informed and private? And how well can they consider benefits and risks at such a time?
At two different sessions on testing and counseling, speakers highlighted the increased numbers of people tested through Botswana’s provider-initiated testing system. However, it was only in response to an audience member’s question that one scientist admitted they were only now starting to consider evaluations that might also assess client satisfaction, access to ART and possible negative impacts subsequent to testing.
The ATHENA Network and International Community of Women Living with HIV/AIDS (ICW), with assistance from the Center for Health and Gender Equity (CHANGE), organized a press conference to highlight the need to examine testing from a gender perspective. For example, the experiences of ICW members point to the fact that “Testing services often do not address the stigma, discrimination and related violence, and loss of livelihood that many women face if their status becomes known. This makes seeking treatment and care a devastating prospect for many.”
The questions raised about the push for testing were good and necessary. What we need to hear about as soon as possible, however, is how the challenges to human rights-based testing and counseling are being tackled. Just a few examples (there are more!). Many physicians are coming to Africa from other countries to help deal with the health-care worker shortage (e.g., from Cuba). How well can doctors who don’t speak local languages ensure that people are able to give informed consent for a test? A study coordinated by Ipas on meeting HIV-positive women’s health needs recommends that women living with HIV be paid as counselors, instead of having them supplement health services as volunteers. Health-care workers in Argentina confirmed that HIV-positive counselors can offer superior services – how many testing programs are taking this approach? How do testing protocols take into account follow-up of people who tested positive (e.g., in accessing ART if needed or in providing treatment and support for mothers and children)?
Regarding reproductive choice: in 1992, when ICW was founded, the network published 12 statements on what was needed to improve the situation of women living with HIV/AIDS; one of those statements was: “The right to be respected and supported in our choices about reproduction, including the right to have, or not to have, children.” In the 2002 Barcelona Bill of Rights, ICW and other organizations stated that a fundamental right for women and girls around the world is “to sexual and reproductive health 1 services, including access to safe abortion without coercion.” So is reproductive choice receiving attention at the AIDS conference?
Some state that it was scarcely addressed; that is certainly true, for example, in comparison to prevention of perinatal transmission. But a few small steps forward have been made if we consider that the topic was virtually ignored in the past. About 20 poster and CD-ROM abstracts included the topic of pregnancy termination or integration/linking of HIV/STI and abortion services; several called for access to safe abortion services or noted how current laws create obstacles for women.
Of course, many people will not read the abstracts and did not see the posters. So was the topic visible otherwise? The T-shirts given away to participants in the Women’s March and Rally (the first to be officially endorsed by an AIDS conference) featured the Barcelona Bill of Rights, including access to safe abortion. Buttons distributed by the ATHENA Network and Blueprint Coalition asked for “sexual rights, reproductive choice and healthy motherhood.” And in an opening plenary speech on the first day of the conference, Louise Binder highlighted the need for women to have access to safe abortion for all indications permitted by law. Now we need to ensure that the 2008 International AIDS Conference includes at least one oral abstract, round-table or panel discussion session on reproductive choice with discussion of issues such as antenatal care for women who choose to become pregnant after knowing their status, access to safe abortion and integration/linkage of postabortion care services into HIV/AIDS information and services, coercive abortion/sterilization as human rights violations, and the possibility of adoption for HIV-positive parents.
One final observation: Louise’s plenary was the final one on 14 August and previous speakers had exceeded their allotted time. This resulted in many delegates leaving the session to go to the next one; considerable numbers of women also left the room before hearing the presentation on women and HIV/AIDS. When her presentation went a bit long, the chair of the session (a woman!) cut off her microphone. To her credit, however, Louise stood her ground, refused to budge and was supported by remaining delegates so that eventually her microphone was turned back on and she could finish. The most insulting thing about this was the chair’s admonition that Louise had to conclude because the next session was about to start and included “important people – Bill Clinton and Bill Gates.” Now what does that say to us about women having a fully recognized and meaningful place at the table??
Some references:
ATHENA Network: http://www.athenanetwork.org 2
ICW press release on testing: http://www.icw.org/node/211 3Ipas study: http://www.ipas.org/publications/en/MDGMON_E06_en.pdf 4
Source URL:http://www.rhrealitycheck.org//blog/2006/08/25/hiv-testing-and-reproductive-choice-how-did-the-rights-based-approach-play-out
Links:1 http://www.rhrealitycheck.org/glossary%23Reproductive+Health2 http://www.athenanetwork.org/3 http://www.icw.org/node/2114 http://www.ipas.org/publications/en/MDGMON_E06_en.pdf

McCain Stumbles on H.I.V. Prevention

Monday, March 19
"The unthinkable has happened. Senator John McCain met a question, while sitting with reporters on his bus as it rumbled through Iowa today, that he couldn't -- or perhaps wouldn't -- answer.

Did he support the distribution of taxpayer-subsidized condoms in Africa to fight the transmission of H.I.V.?

What followed was a long series of awkward pauses, glances up to the ceiling and the image of one of Mr. McCain's aides, standing off to the back, urgently motioning his press secretary to come to Mr. McCain's side."
--Adam Nagourney, NYTimes Blog

Read the full story at:
McCain Stumbles on H.I.V. Prevention
MediaMatters for America

International Women's Day

Just in time for International Women's Day this year, the Women Won't Wait campaign launched a timely report recognizing the intersectionality of violence against women and HIV/AIDS. "Show Us the Money: Is Violence Against Women on the HIV&AIDS Funding Agenda?" by an international coalition of human rights and health organizations, calls for changes in the policies, programming and funding streams of national governments and international agencies.

Other IWD information:

International Women's Day 2007

Women's E-news

Human Rights Watch: Women's Rights Division

Margaret Chan, Director-General of the WHO, discusses the importance of promoting women's health this International Women's Day:

"On International Women's Day, I invite you to join me in celebrating women worldwide. Women are the backbone of all our societies - as leaders, as caregivers, and as mothers. Yet on this day and every day, we remember that too many women in the world lack access to the most basic health care.

Women have particular needs and face specific health issues. However, the health needs of women are given neither the attention nor the prominence they deserve. Each year, for example, more than half a million women die from complications related to pregnancy and childbirth alone - a number that has hardly changed in 20 years. In 2006, 74% of people living with HIV in sub-Saharan Africa were young women.

This year's International Women's Day is devoted to ending impunity for violence against women and girls. We know that intimate partner violence is the most common form of violence in women’s lives - much more so than assault or rape by strangers or acquaintances. The high level of physical and sexual violence committed by an intimate male partner has shocking consequences for women's health. Furthermore, one in five women reports being sexually abused before the age of 15, which is associated with ill health for years to come.

The health of women is given far too little space in plans for development and too little attention in many health agendas...."

Read entire statement

Update: Dr. Gao will travel

Earlier today, Chinese officials finally granted AIDS activist Dr. Gao Yaojie permission to travel to the United States next month to accept her award from Vital Voices, reported the AP/New York Times (http://www.nytimes.com/aponline/us/AP-China-AIDS-Whistleblower.html).

For the last week, Dr. Gao has been confined to her home in the Henan Province by Chinese officials pressuring her not to travel to the US. The 80-year-old doctor has been instrumental in exposing the harsh realities behind China's AIDS epidemic, which the Chinese government would rather leave hidden. After heavy pressure from international groups during Dr. Gao's detention, the Chinese government reportedly told the US embassy: "We will abide by her decision to come."

Read more about the Chinese government's efforts to cover up the detention itself:
"China Covers Up Detention of AIDS Doctor", February 16th, http://www.nytimes.com/2007/02/16/world/asia/16china.html

Women, HIV/AIDS and Human Rights Skills Building Workshop held in Toronto August 14-17, 2006.

CURRICULUM with ANNOTATED BIBLIOGRAPHY and CASE STUDY available online!

Online athttp://www.law-lib.utoronto.ca/diana/women_hiv_aids/contents.htm

Table of Contents
1) Overview Articles

2) Sex, Gender & Social Context in the HIV/AIDS Pandemic
(a) Stigma, Discrimination, and Violence
(b) Gender, Sexuality, and HIV/AIDS
(c )Criminality and HIV/AIDS
(d) Sex Trade Work
(e) Women's Property and Inheritance Rights
(f) Orphan & Vulnerable Children in Changing Family Structures
(g) Neglected Population: Indigenous & Aboriginal Women

3) Challenges in Access to Prevention Treatment and Care
(a) Women and HIV Testing
(b) Sexual Violence
(c) Access to Post-Exposure Prophylaxis
(d) Access to Microbicides & Other Female-Controlled Prevention
(e) Access to Reproductive Health Services, including Abortion
(f) Neglected Population: Adolescent Girls
(g) Evidence-Based Practices and Policies
(h) Community and Family Based Care
(i) Gender Dimensions of Health Rationing

4) Accountability, Advocacy & Documentation

CASE STUDY:Treatment Action Campaign v. The Minister of HealthA case decided in 2002 by the Constitutional Court of South Africa whichfound that pregnant HIV-positive women had the constitutional right tomedication to prevent mother-to-child transmission of HIV.
Online at: http://www.law-lib.utoronto.ca/diana/casestudies.html

CURRICULUM of our Spanish workshop held August 17,“Mujeres, VIH-SIDA y derechos humanos: explorando las intersecciones”,see the RED ALAS website:http://www.red-alas.org/click on: “Publicaciones”then click on: "Capacitación”

ICW: Reproductive Rights and Wrongs

The International Community of Women Living with HIV/AIDS (ICW) is the only international network of HIV positive women and has 5000 members worldwide.

Our vision is a world where all HIV positive women:
Have a respected and meaningful involvement at all political levels, local, national, regional, and international, where decisions that affect our lives are being made;
Have full access to care and treatment; and
Enjoy full rights, particularly sexual, reproductive, legal, financial and general health rights;
Irrespective of our culture, age, religion, sexuality, social or economic status/class and race.

Here we feature the story of Sthemiso, an ICW member, whose experiences powerfully illustrate why the sexual and reproductive rights of HIV positive women are a key focus of ICW's advocacy work and communications.

For more information about ICW's work and for copies of publications please see www.icw.org . Or get in touch - info@icw.org.



My Story of Motherhood: Reproductive Rights and Wrongs

We all know that life circumstances change and feelings shift. Perhaps something that you felt certain about five years ago is not necessarily so certain now. Sthembiso* tells us the story of her daughter, born when she was only a girl. She describes the stigma of being the HIV positive mother of a disabled child who she now knows is also HIV positive. She explains why previously she did not want another baby. Today her life is very different and she longs to have one.

'For me motherhood is a complex issue. I have an HIV positive child who has another, completely separate disability. I feel guilty each time I talk directly about her. My daughter was born in 1993. In 1996 I had a stillborn child. In 1998 I had a termination of another pregnancy and was pushed into being sterilised. At the same time I was living with no hope for treatment, had an abusive partner, and was jobless with no real home of my own. At that point I would have said I absolutely did not want to have any more children.

When I went into labour we were building a little mud house outside the main house. When I felt the pain and saw things coming out I told my mother but she insisted that I work even harder. I had to fetch and carry a 25-litre container of water from the tap at the main house. (That mud house is where my daughter and I ended up sleeping because my mother did not want the noise of the baby to disturb her.) I worked the whole day mixing the mud, fetching the water and cooking. According to my mother this was to help the labour process. Obviously I couldn't complain – I had committed the worst sin ever by falling pregnant at 16 without being married. My parents were doing me a favour keeping me at home when they could have rightfully kicked me out. After 3 pm when the pain was unbearable my mother allowed me to have a bath and to
take a taxi to the clinic – on my own. When I got there they shouted at me for arriving late.

After being examined they called an ambulance – I needed medical attention at the hospital. But the baby came before the ambulance. She was a girl and she did not cry – I was told she was too tired. Finally we were ferried to hospital where she was kept in the nursery for five days. I only learned nine months later that loss of oxygen at birth caused her disability. I do not want to blame my mother but there is a part of me that says if she had not made me work so hard, things would have turned out differently. Had she sent me to the clinic earlier my daughter would probably not be disabled. I would have felt better had she at least accompanied me to the clinic. I do not know why I am writing this. It is the first time I am actually acknowledging this
disturbing reality of my life.

Changes and challenges

My life has changed now. My daughter is almost 15. She is in care after I realised it was the best option for her as her needs are becoming more complex the older she gets.

It was after coming to terms with my HIV diagnosis, meeting other women in similar situations, and beginning a new life, that the desire to have another child cropped up. Having another child (if I do have one) would give me the opportunity to enjoy being pregnant by choice and to be a mother in different circumstances. I think of my daughter too; I am her only family. What will happen if I die? I would pass on peacefully if I knew that I was not leaving her alone no matter how long it took her sibling to grow enough to understand there is a sister who needs love and nurturing.

My desire for another child has thrown up many challenges. The first is to get a partner. I am in my 30s, have HIV, a disabled child, and I am a feminist. HIV helped me to discover myself as a woman and I am finding it really hard to find and keep relationships with men. I have explored in vitro fertilisation (IVF) as an option. It turns out that male partner participation in treatment is essential. One boyfriend agreed to take the treatment with me. However, he refused to go for a fertility test, arguing that he did not need to as he already has children. In the end he went after I negotiated and traded off a fair degree of my power in the relationship. The results showed that his sperm count was low and he needed fertility treatment for the IVF to
be successful. He did not receive the news very well, and he blamed me for bringing it to his attention. A couple of months later the relationship was over.

The question is, do I wish to meet another man and tell him my story, beg him for his sperm and loose some power in the process? The answer is, I would rather not, but what choice do I have? Maybe I should try the sperm bank, but will they take me if I disclose my HIV status?

Pain and Joy

All those years ago when I was sterilised I felt as though I was being punished and judged. I did not want to have a child then. But I did not want to be sterilized either. Recently my doctor suggested that perhaps we could reverse the sterilisation. Two weeks ago I learned
with shock that the sterilisation was irreversible. I am still dealing with this. I have not lost hope. I will continue to explore the options and the possibilities I have.

I draw strength and support from a woman living with HIV who is in a similar situation. We talk and cry over the dramas as they unfold. I always claim my case is the worst, but she tells me no, because she is married and hasn't told her husband she was sterilised. If she had revealed this, her husband's family would not have paid lobola (bride price) for her. She is worried about what will happen to her if she discovers her sterilisation cannot be reversed either, as this is her only solution.

As I live and grow with HIV, I see other women with HIV having healthy children. I feel joy and pain when I learn that someone has had a baby. I do not go anywhere near baby shops. I avoid places with infants.

I love my daughter very much, I love her gorgeous smiles, I enjoy the way she creatively uses her body to communicate her needs, wants and emotions with me using MAKATON (a communication technique she uses as she cannot speak). I enjoy the way she propels her wheelchair to dangerous places in the house to attract my attention, the way she is self-aware, how she will not take on another activity before you clean her hands, how she will behave when she sees another disabled child, how she is when I am with her alone or with her carers and teachers, how she learns and copies games from able-children and imitates them using the abilities she has, and how she recognises anything said and sung in her home language Zulu although she has not spoken or lived in a community that speaks the language in years. I love the way she portrays my character and how our interests and behaviour are the same sometimes. I love reading her school reports. Dear daughter. I cannot begin to say how grateful I am that she's almost fifteen. My daughter and I are very lucky. I know many children in her situation no not have access to what she has.

HIV has become less of a worry as far as my desires are concerned. I am on treatment and receive high quality care. All my medical professionals are supportive. My state of health is excellent. Unlike many women, I have access to information, services, resources and support. For me the most stigmatising thing was having a disabled child and having HIV. Now with support and love from other HIV positive women, and professionals, I am surviving that double stigma. There is no way I could be brought down by the stigma of being HIV positive and pregnant.'

(Source ICW News 34 -please link to http://www.icw.org/files/ICW%20English%2034%20Web.pdf)

*Sthembiso's name has been changed