30 Years of HIV/AIDS

It all started on June 5, 1981 when the first cases of AIDS were published in a medical journal. The syndrome did not have a name yet. The term Acquired Immune Deficiency Syndrome was introduced by the Center for Disease Control in 1982. The virus that causes the syndrome was discovered in 1983 and was named Human Immunodeficiency Virus. The POZ Timeline–Milestone in the HIV/AIDS Pandemic documents these and other milestones over the past 30 years including the end of the HIV travel ban and the first person cured of the disease (both in 2010).

The Center for Disease Control (CDC) is featuring a lecture series titled – “HIV/AIDS: 30 Years of Leadership and Lessons”.

The Smithsonian’s National Museum of American History will mark the 30th anniversary of the emergence of what became known as the HIV and AIDS epidemic with a three-part display and website beginning June 3.

“HIV and AIDS Thirty Years Ago” will look at the public health, scientific and political responses in the early phase (1981-87) of the global pandemic. This showcase will be located in the museum’s “Science in American Life” exhibition, which focuses on the connections among science, culture and society in American history. The display will feature photographs, magazine covers and other graphics plus equipment that Dr. Jay Levy used to isolate the virus in his lab at the University of California, San Francisco, a copy of the Surgeon General’s 1986 report presenting the government’s position, samples of the drugs AZT and Retrovir and public health information pamphlets from AIDS service organizations. The website will be available at americanhistory.si.edu/hivaids.

CNN –  30 Years of AIDS Moments to Remember

World AIDS Orphans Day

May 7th is World AIDS Orphans Day. I am commemorating the day by highlighting how we can end pediatric HIV. There are several campaigns going on concurrently to end vertical transmission of HIV from mother to child by 2015 by enabling pregnant women with HIV and newborn babies born to positive mothers universal access to ARV meds. Pediatric HIV is an entirely preventable disease.

I have reported on this topic before, but it bears repeating. All the major players are now saying it is an achievable goal to halt mother to child transmission of HIV/AIDS within the next few years. UNICEF has revealed it’s Children and AIDS: Fifth Stocktaking Report, 2010. Here are some statements from The Global Fund, Elizabeth Glaser Pediatric AIDS Foundation, UNICEF, and World Health Organization. I can’t wait until there are no more HIV-positive orphans for me to advocate for! Here are some video reports.

UNICEF has released a statement which states an “HIV-free generation is achievable”.

According to latest United Nations data, 370,000 children were born with HIV in 2009.

“This is something we know how to prevent.”

Just over half of all pregnant women infected HIV got the drugs they needed to prevent mother-to-child transmission in 2009, compared with 45 percent in 2008.

Margaret Chan, director-general of the World Health Organization, said there was now “strong evidence that elimination of mother-to-child transmission is achievable.”

In a separate statement before world AIDS day on December 1, the UNAIDS director Michel Sidibe said: “Nothing gives me more hope than knowing that an AIDS-free generation is possible in our lifetime.”

’20 20′ – ABC News

Born HIV Free Achievements of the Campaign to Move us Toward an HIV free Generation

UNICEF – Children and HIV and AIDS – ‘Children and AIDS Fifth Stocktaking Report’ launched

Patient Assistance Programs for HIV Medication

The following information is provided by the American Academy of HIV Medicine

Many states have reported either waiting lists or changes in their ADAP, insurance, and other programs. Co-pays and deductibles associated with private insurance, state subsidized insurance, or Medicare can make accessing lifesaving medications very difficult.

Most drug companies have programs to provide free drugs to people with no insurance, inadequate insurance, or financial difficulties. Each program has different requirements, and often, a healthcare provider needs to make the phone call, and fill out a form.
Patient Assistance Programs

The Fair Pricing Coalition also publishes this printable guide to accessing patient assistance programs for HIV and Viral Hepatitis drugs.

Patient Assistance and Co-Pay Programs for HIV and Viral Hepatitis Drugs

ADAP Crisis

Many states have experiences state budgetary shortfalls that have lead to waiting lists for state AIDS Drug Assistance (ADAP) programs. A private partnership now offers a resource specifically for patients on ADAP waiting lists.

• On an ADAP waiting list? Welvista Pharmacy can help!

Other Resources

• RX Assist: Patient assistance program directory listed by manufacturer

• The Access Project: Patient assistance and co-payment programs from Housing Works

• Needy Meds: Patient assistance or drug co-pay programs for medications required to treat conditions in addition to HIV disease, e.g., medications for high cholesterol

• Together RX: Prescription savings program for uninsured individuals sponsored by many of the nation’s leading pharmaceutical companies

• Partnership for Prescription Assistance: Public and private patient assistance programs directory

• Positively AwareAIDSMeds and Project Inform Hotline (1-800-822-7422): HIV co-pay programs resource

Conflicting Reports on How People Do Long Term When Born with HIV

Two new studies have been reported over the past 2 weeks about how patients born with HIV are doing as young adults.

The first is from St. Mary’s Hospital in London; Young Adults Who Were Infected at Birth: the Complexities of Lifelong HIV are Increasingly Apparent. It presents health data on 58 perinatally infected young people. Two thirds of the people in the study were taking ARV medication. The report indicates many medical and psychological complications, and implies the complications were in the one third of people who were not adhering to treatment.

Adherence to medication is challenging for this group and a problem which drives many of the health complications described above.

Individuals who had good self-reported adherence in childhood generally maintained the same behaviour as young adults and continued to have good treatment response. Similarly, those with poor adherence in childhood most commonly continued to have difficulties, with sub-optimal clinical outcomes.

The researchers suggest that as adherence patterns appear to be established in childhood, it is essential to support adherence when children begin therapy in order to promote long-term adherence and survival.

The second study is by Dr. Russell Van Dyke at Tulane in New Orleans; Kids Born with HIV Growing Up Well. This report also indicates that 2/3 of participants had undetectable viral loads. The other 1/3 have complications although the doctor indicates

“their disease can be treated as chronic, more akin to diabetes than cancer. Van Dyke expects many of the patients in his study to have a normal or near normal life span.”

“These kids are doing very well,” Van Dyke says. “They’re going to school and doing all of the things that kids should do. Hopefully, they will be living 50 or 60 years or more, so what’s going to happen 40 years from now is the real concern.”

Life Expectancy for Children Born with HIV

One of the big questions I hear when people are considering parenting a child with HIV is “what will their life expectancy be?” Dr. McComsey says “relatively normal life expectancy” and Dr. Gallant says “close to normal”. Medical professionals don’t know the exact answer because children born with HIV/AIDS are nearing 30 years of age at the most (HIV/AIDS was first discovered in this country in the early 1980s). Sadly, many of the children born with HIV in the early days died of AIDS because there were no adequate treatment options. However, children born today with HIV have an excellent prognosis due to the antiretroviral medications. Studies regarding life expectancy are done on adults and it is extremely important to remember that the participants in these studies are often in vastly different situations than children growing up in adoptive families. For example, they have other risk factors that affect their life expectancy in addition to HIV such as poor nutrition, co-infections, IV drug use, homelessness, low socioeconomic status, unhealthy lifestyles and poor adherence to treatment.

Only the most recent studies are worth reading since HIV/AIDS research changes all the time as the treatment options get better. Studies from 2005 indicate anywhere from 6 years less than normal to 21 years less than normal. The average between these 2 extremes is 13.5 years less than the normal US lifespan (78) which is an average life expectancy of 64.5 years (2005). These studies are already 6 years old and the numbers get higher all the time as the medications get better. This means that  children born with HIV can live long enough to meet their grandchildren. The best thing we can do to increase life expectancy is encourage our children to lead a healthy lifestyle and diligently adhere to their medications.



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.