Thank You Magic Johnson!

Nearly 20 years ago, in November 1991, Magic Johnson courageously announced that he was HIV positive and retiring from the NBA Lakers.

Magic Johnson is one of the most notable and admired public figures speaking out. I find that most people don’t want to discuss HIV, but they are fine discussing HIV in the context of Magic Johnson. When I bring up the Magic Johnson topic in conversation and ask people what they think is going on with him and his HIV, people seem to think that his case is ‘special’ and that the only reason he has lived so long is because he can afford the best medication that money can buy. That is true, but what people don’t seem to understand is that anyone with health insurance can afford the same medicine that Magic Johnson takes (although it may not be affordable in 3rd world countries yet). The truth is – there is nothing special about his case. He eats well, exercises, takes his meds and has an excellent long term prognosis.  He is leading a normal healthy life with HIV like many others who have access to meds and diligently adhere to their treatment.

Other people I have spoken with had heard that Magic is ‘undetectable’ and thought that meant he was ‘cured’ which is an excellent opportunity to discuss what ‘undetectable’ really means and how it relates to being ‘close to non-infectious‘.  People are always hugging Magic Johnson and nobody seems alarmed, so I use this as a starter point for discussing transmission.

So thank you Magic Johnson! Through you I have finally found a way to bring up the topic of HIV and educate people about the realities of day to day life with HIV and the realities of transmission. Thank you for your courageous way of openly living with and talking about HIV since the very beginning. You are single-handedly bringing enormous awareness.

China Implements ‘Treatment as Prevention’ Strategy

The World’s most populous nation embraces groundbreaking HIV/AIDS prevention strategy. It is implementing a “treatment as prevention” strategy. The proposal calls for widespread HIV testing and treatment. The strategy is based on the results of British Columbia Centre for Excellence in HIV/AIDS (BC-CfE) research published last summer in the Lancet (which I reported about here). Research results showed that the benefit of highly active antiretroviral therapy (HAART) extend beyond prolonging survival, to significantly preventing the transmission and spread of HIV.

“The expansion of HAART treatment throughout the world is critical to containing and curbing the global HIV and AIDS pandemic,” said Dr. Julio Montaner, director of the BC-CfE. “We applaud China’s leadership in implementing treatment as prevention to save lives, prevent infections and in the long-term save money.”

Click on the image to read the press release.

Children Born with HIV who are Now Adults

There is a new section of links in the right column titled “Grew Up with HIV”.

Now that HIV/AIDS has been around for nearly 30 years, there are adults who have had HIV all their lives. Thankfully, they are speaking out about their lives and inspiring others. These people were born at a time when anti-retroviral medications were not yet available (before 1996) and they know the heartbreak of losing loved ones who did not live long enough to access ARVs. Those who survived the early days with very few treatment options eventually got access to ARVs and many lead normal healthy lives now. However, some adults in this same situation were not as lucky and their disease progressed to AIDS before ARV treatment was an option which has lead to health problems or cognitive issues. Others did not grow up in advantageous living conditions (some examples – parents who were not attentive to medication regimes, neglectful situations, and/or living with HIV+ parents in extremely low socio-economic positions without nutrition among other disadvantages)…their stories can also be found online, but I am choosing to feature individuals who grew up in optimal environments similar to those that adoptive families provide, as I feel their stories are most relevant to our topic. This post is open to comments and discussion.

UNICEF Report – Blame and Banishment: The underground HIV epidemic affecting children in Eastern Europe and Central Asia

Alexandra - 17 months. Copyright UNICEF/NYHQ2004-0698/G. Pirozzi

The following are some excerpts from the UNICEF Report – Blame and Banishment: The underground HIV epidemic affecting children in Eastern Europe & Central Asia. Emphasis added to highlight the areas I find most relevant to this blog topic.

“This report brings to life the experiences of children, families and young people living with HIV.  It gives voice to their stories of despair, stigma and social exclusion, as well as to their courage and hope.

Access to antiretroviral treatment is still among the lowest in the world, and stigma and discrimination that violate the basic rights and dignity of people living with and affected by HIV, including children, are hampering further progress in prevention, care and support.

Eastern Europe and Central Asia are the only parts of the world where the HIV epidemic remains clearly on the rise. Increases of up to 700 per cent in HIV infection rates have been found in some parts of the Russian Federation since 2006. Women, who now account for some 40 per cent of new cases compared to just 24 per cent under a decade ago are increasingly affected by HIV, as are children. The total number of HIV-positive pregnancies has doubled during the past five years.

Children born to HIV-positive mothers suffer the consequences of these prejudices, experiencing a much higher likelihood than other children of being abandoned at a hospital, or being left to live in isolation at a specialized care institution. Across Eastern Europe, children born to HIV-positive mothers have a much higher risk than others of being abandoned at or soon after birth. Their removal from their mother, their family and community is an expression of both the stigma surrounding the HIV disease and of the multiple hardships that overwhelm many disadvantaged women.

Currently, the region has the highest rates of family separation in the world, with approximately 1.3 million children deprived of parental care and isolated from family and community, even though the vast majority still have biological parents. The relinquishment of children to institutional care is an established solution for families in distress – a practice that has historic roots and continues to the present day, despite strong evidence of its negative consequences for children’s well-being.

The infrastructure of institutional care remains as that of the Soviet era. Infants who are left in maternities are transferred to baby homes (Dom Ribyonka) where they stay until the age of three. If they are not adopted during these early years they are transferred to children’s homes (Dyetski Dom) for the next four years and then onwards to ‘internats’ for 7- to 18-year-olds. This movement through different institutional settings leaves many children poorly equipped to cope or find jobs once they leave and highly vulnerable to abuse and exploitation. Young people graduating from these institutions have much higher rates of alcoholism, drug use, criminal behavior, unemployment, imprisonment and suicide than their peers.

For children with HIV who live in institutions, the chances of being adopted are particularly slim as a result of widespread prejudice. Elena, from Ukraine, who adopted two HIV-positive girls (aged 6 and 7), shares her experience:

From the moment I saw them, I immediately knew that I would love them like my own children. Imagine my surprise when the adoption agency tried to convince me not to take these two girls! They said to me, ‘Why would you want such a headache, you should take some other children.’

Despite growing availability of alternative family-based solutions, residential care is not diminishing. In recent years, the proportion of children in residential care has increased.

In the Russian Federation and Ukraine, about 6 to 10 per cent of children born to HIV-positive mothers are abandoned in maternity wards, pediatric hospitals and residential institutions, with little opportunity for foster care, adoption or family reunification. While the relative proportion of children abandoned at birth by these mothers has been decreasing, the number of HIV-positive pregnancies has grown, creating a steady increase in the cumulative numbers of children abandoned to state care overall. The reasons for infant and child relinquishment by HIV-positive women are complex. An in-depth qualitative study of HIV-infected mothers, their families and health-care workers from four regions in the Russian Federation concluded that HIV was not the primary reason for infant abandonment. Rather, the key factors increasing the likelihood of abandonment were: unwanted pregnancy, poverty, lack of family support, drug and alcohol use, fear of the infant having birth defects or disabilities, and an inability to support the costs of caring. Of these, the strongest predictor was unwanted pregnancy.

Within the context of child-care reforms in many countries of the region, support to biological families to keep their children, prevention of abandonment, and the development of family-based care alternatives to institutionalization have increasingly been a focus. UNICEF has been a key partner in many such initiatives. In Ukraine, for example, almost 90 per cent of maternities have established linkages with social services to address child abandonment. A number of ‘Mother-Baby Centres’ have been opened by state social services to support new mothers in difficult circumstances. Many of the mothers are teenagers or single women who have been rejected by their families. Reports show that over 60 per cent of mothers who are in contact with the centres change their minds about abandoning their babies. Similarly, projects led by NGOs, such as the MAMA+ project of Health Rights International with the Ukrainian Foundation for Public Health, have provided support for HIV-positive and drug-using pregnant women and mothers to enable them to keep their children. A range of client-oriented services are provided, including day-care centres, family visits, referrals to health-care facilities and drug and alcohol addiction counseling. The All-Ukrainian Network of People Living with HIV/AIDS has also taken action to find family-based care options for abandoned HIV-positive children living in institutions. Finding adoptive parents has been particularly challenging as a result of many legal obstacles, widespread social misconceptions about HIV, and the high levels of stigma and ignorance associated with the disease. As expressed by one of the project coordinators from the Network: “We have looked for adoptive parents for over two years. It is extremely difficult to find such people. We believe we need to find such families and provide them with all the necessary support. The majority of HIV-positive kids have suffered through living in orphanages and need special care.”

Yana was just eight years old when she started living on the streets. Her father, an alcoholic, died young and she was separated from her mother who was sent to jail. Originally from Moldova, one of the poorest countries in Europe, Yana wandered through several towns and eventually ended up on the streets of Odessa, Ukraine. Her ‘home’ was a makeshift shed in a park. A group of 20 street children built the hideout themselves, the youngest only six years old. They begged, stole and prostituted themselves to survive. Drugs helped them cope with their lives. Through sharing needles they also shared HIV. Yana fell sick and died at the age of 13 on the streets of Odessa, addicted to drugs and infected with HIV…”

A recent study of 15- to 19-year-old street children in St Petersburg, involving 313 participants, found that almost 40 per cent of them were HIV-positive. High levels of HIV prevalence have also been found among street children in studies in Odessa and Donetsk, Ukraine. While there are no reliable estimates of how many children are without adult supervision, living and/or working on the streets, experts agree there are probably over one million in the region. The large majority end up on the street as a result of running away from physical and psychological abuse within families, or from state-run orphanages and shelters. Once on the streets, sex and drugs become part of these children’s daily reality and other street dwellers compose their social network. Almost all street children report being sexually active and the majority have multiple partners, both through sex among peers and through selling sex.

In 2008, antiretroviral therapy (ART) coverage among adults in the region was estimated to be only 22 per cent, the second lowest in the world. The main success of health systems in the region has been the high level of coverage of services to prevent mother-to-child transmission of HIV (PMTCT) and access to pediatric AIDS treatment. An estimated 94 per cent of pregnant women have access to ARV prophylaxis. For HIV-positive children, ART coverage is estimated to be 85 per cent.

Responding effectively to the HIV epidemic in Eastern Europe and Central Asia will require a paradigm shift from blame and exclusion to support and inclusion. A rights-based approach provides the basis for that shift. As stipulated in the Convention on the Rights of the Child, all rights apply to all children without exception, and States have an obligation to protect all children from discrimination and to take positive action to promote their rights. In building and sustaining the response to HIV, governments must take the lead in developing approaches that are firmly rooted in the needs and rights of children and young people. Developing a rights-based response to meet the needs of children and young people will also require additional funding. Combined international investments in HIV in the entire region do not come close to investments in a single country such as Ethiopia that has a similar number of new HIV infections annually as the Russian Federation or Ukraine, and which also falls amongst the top twelve most affected countries in the world.”

Revaccination May be Necessary for HIV-positive Children

The AIDS Beacon

Revaccination May Be Necessary For HIV+ Children

Revaccination against vaccine-preventable illnesses, such as measles and tetanus, may be necessary in HIV-positive children after starting antiretroviral therapy, according to researchers at the John Hopkins School of Public Health.

In addition, children on antiretroviral therapy may need repeated vaccines or higher dosages to retain their immunity against illnesses over the long-term.

“It’s clear that many HIV-infected children on treatment remain susceptible to vaccine-preventable diseases and would benefit from revaccination,” said Catherine Sutcliffe, lead author of the review, in correspondence with The Beacon.

“Most children receiving treatment responded well to revaccination, although levels of immunity still decreased over time,” she added.

Previous studies have shown that children with HIV often do not respond as effectively to vaccines as children without HIV. This can lead to weaker immunity to vaccine-preventable illnesses or loss of immunity over time.

Starting highly active antiretroviral therapy (HAART) helps restore the immune system and boost immune responses. However, it is not known whether this helps improve immunity from vaccines that were given before starting antiretroviral therapy, or whether children starting HAART instead need to be revaccinated.

To answer this question, the researchers examined previously published studies in which children were vaccinated before starting HAART and their levels of immunity were measured again afterward.

The researchers found that results were mixed, with some children showing improved immunity after starting antiretroviral therapy while others lost their vaccine protection.

For example, one study of children vaccinated with the measles-mumps-rubella (MMR) vaccine found that 40 percent of the children who failed to achieve a vaccine response before starting HAART gained immunity afterward.

However, the same study also found that 53 percent of children who had gained immunity to MMR before HAART lost their immunity after starting antiretroviral therapy.

Click the photo to continue reading…

HIV Positive Muppet

HIV positive muppet on Sesame Street

(CNN) — Big Bird and the Cookie Monster have some new friends, but they’re a long way from “Sesame Street.”

One of America’s best-loved children’s shows, which began life on a fictional New York street over 40 years ago, is about to land in Nigeria under the title of “Sesame Square” — bringing with it some distinctly West African twists.

The show stars Kami, a girl muppet who is HIV-positive, has golden hair and a zest for adventure; and Kobi, an energetic, furry, blue muppet whose troublesome escapades help others learn from his mistakes.

In a country with a population of over 150 million — where, according to the CIA World Factbook, nearly half are under the age of 14 — the show will address some of the biggest challenges faced by young people in the region: AIDS, malaria, gender inequality, religious differences…

[Click the photo to continue reading…]

Updated Guidelines for Treatment of HIV+ Children and Teens

The AIDS Beacon

HHS Releases Updated Guidelines for Treatment of HIV-Positive Children and Teens

The United States Department of Health and Human Services has released an updated version of its “Guidelines for the Use of Antiretroviral Agents in Pediatric HIV Infection.”

The guidelines contain updated recommendations in several areas, including diagnosis of HIV in infants, start of antiretroviral therapy, selection of antiretrovirals, and adherence to antiretroviral therapy in children and teenagers.

The guidelines now also include a rating system to indicate the strength of each recommendation, and formatting changes have been implemented to improve readability. For example, a section on drug side effects in children that includes information on risk factors, symptoms, preventative measures, and treatment options is now presented in a table format for ease of use.

The guidelines are intended for use by doctors and other health care professionals when treating HIV-positive children and teens.

Key updates to various sections of the guidelines are summarized below.

Diagnosis Of HIV In Infants

The guidelines now recommend HIV testing at birth for infants who are at high risk for contracting the virus. This includes babies born to HIV-positive mothers who did not receive prenatal care or prenatal antiretroviral therapy, or who had HIV viral loads (amount of virus in the blood) greater than 1,000 copies per milliliter near the time of delivery.

HIV infection in adults is usually diagnosed by looking for antibodies – proteins made by the immune system to help identify and fight bacteria and viruses. In infants, however, tests for HIV antibodies may lead to false-positive results, as children of this age group often still carry their mothers’ HIV antibodies.

To avoid a false diagnosis, the guidelines continue to recommend tests that detect the virus itself to determine HIV status in infants younger than 18 months. This includes HIV DNA PCR assays and HIV RNA tests, both of which can detect the HIV virus directly.

The guide also continues to recommend that babies be tested for HIV at 14 to 21 days after birth, age 1 to 2 months, and 4 to 6 months of age.

Start Of Antiretroviral Therapy

Suggestions for when to initiate antiretroviral therapy vary according to age group.

Antiretroviral therapy is now recommended for children older than 12 months who have normal CD4 (white blood cell) counts but HIV viral loads of 100,000 copies per milliliter of blood or higher, even if their symptoms are mild or nonexistent.

For children under the age of 12 months, the guidelines continue to recommend starting antiretroviral therapy regardless of CD4 count, viral load, or the presence or absence of symptoms. Several studies have shown that starting therapy early in children of this age significantly reduces the chances a child will progress to AIDS or die.

In children with normal CD4 counts whose HIV viral loads are less than 100,000 copies per milliliter, and who have mild or no symptoms, initiation of treatment can be either considered or deferred.

Selection Of Antiretroviral Drugs For Treatment Naïve Patients

As with adults, all HIV-positive children should be treated using combination therapy that includes at least three different antiretroviral drugs from two different classes.

However, the updated guidelines now indicate that non-nucleoside reverse transcriptase inhibitor (NNRTI)-based therapy is not recommended for children younger than 3 years of age who have been exposed to single dose Viramune (nevirapine).

Click the image to continue reading…

Preventing Mother to Child Transmission of HIV/AIDS

The Kaiser Family Foundation is reporting live from the XVIII International AIDS Conference in Vienna Austria, which is going on now. Below is a video. After an introduction, Bill Gates starts speaking about ‘Building on Success: A Roadmap for HIV Prevention’ at 8:00 minutes.

During his presentation, he speaks about preventing mother to child transmission saying that ‘we can eliminate pediatric AIDS’. The entire video is 48 minutes long and covers lots of different HIV/AIDS topics, so those who are primarily interested in the section of the video regarding pediatric HIV/AIDS and prevention may want to forward the video to start watching at 38:15. At this point is a Q & A with Elizabeth Glaser Pediatric AIDS Foundation president Chip Lyons and Bill & Melinda Gates Foundation co-chair Bill Gates. The highlight: Lyons asked Gates what we could do to step up our efforts to prevent new pediatric infections, and how we could move closer to eliminating altogether HIV and AIDS in children.

“It’s outrageous that we haven’t done better on [eliminating HIV and AIDS in children],” Gates answered. “We need to get countries to set aggressive goals. We need to get the political leaders to recognize the tragedy that this is.”

He added that he was “horrified” that only 45 percent of women currently had access to PMTCT services.

“In terms of cost of the intervention, the impact on the lives involved, that should be something that we have above 90 percent. This is one where, even in the next year, I’d like to see a big change.”

He expressed optimism that this goal was entirely reachable, and acknowledged Elizabeth Glaser Pediatric AIDS Foundation’s pivotal role in making this happen.

Amid Recession, Children with HIV Worldwide are in Need of Homes

AIDS Beacon Article

HIV Adoption Article

Although few prospective parents consider adopting a child with HIV, there are many such children in need, and the experience of adopting HIV-positive children can change the lives of all of those involved. With the lifting of the HIV travel ban, bringing HIV-positive children to the United States from other countries has become easier, and there are also HIV-positive children in the U.S. waiting to be adopted.

By the end of this year, an estimated 25 million children around the world will have lost one or both parents to AIDS, including thousands of children in the U.S. At the end of 2008, nearly 2.1 million children were living with HIV worldwide. With the current economic recession, children affected by HIV now need more help than ever.

International Adoption Rates Are Dropping

Although there is little data available on adoption of HIV-positive children, comparisons of overall international adoption numbers suggest rates are dropping.

According to the U.S. Department of State, the number of international adoptions into the U.S. has been decreasing steadily since 2004, with a total of 12,753 adoptions occurring in 2009 compared to a high of 22,990 in 2004.

From 2005 to 2009, the top four countries from which children were adopted were China, Russia, Guatemala, and Ethiopia, three of which have relatively low adult prevalence rates for HIV/AIDS. Ethiopia’s prevalence rate, the highest of the four at 2 percent, is still fairly low compared to many African nations.

In India, recent reports have claimed that adoption centers were unable to find families willing to adopt HIV-positive children, and as a result, no HIV-positive children were adopted in India from 2008 to 2009.

[Click the image above to continue reading]