It’s hard to find recent scientific and clinical studies about life expectancy of people living with HIV/AIDS in the western world. Keep in mind that life expectancy varies so much depending on when a person is diagnosed, how diligent the patient is with medication compliance, as well as their social situation (nutrition, street life, drug use, accessing medical care, mental illness, prostitution, co-infections, etc). This recent report in Medical News Today is indicating an average life expectancy of 65.8 years in the United Kingdom.
The current edition of POZ magazine has an article titled “All Grown Up with HIV”. It features 4 individuals who were infected with HIV as youth. Two were infected perinatally and two were infected behaviorally as teenagers. I’m featuring the 2 individuals who were infected perinatally as that is the topic of this blog.
Thirty years into the epidemic, a new crop of kids faces adulthood—with HIV. From babies born with the virus to teens who acquired it behaviorally, members of this new generation struggle to navigate survival while making their way through the world. The stories of these four brave young people are examples for how to succeed in spite of HIV. They also serve as cautionary tales, reminding us of the price we pay for not teaching our children well. Let lessons be learned.
Lafayette Sanders, 24, West Philadelphia,
Having found power in disclosure and self-advocacy, musician Lafayette has found a new life. Now that he has broken down his own stereotypes about HIV, Lafayette is trying to help other people do the same.
I was in the doctor’s office. I was 13; it was a few months after my mother passed away. My grandmother took me for a checkup, and I was then told about me being HIV positive. My grandmother knew what I didn’t: My mom died of HIV, HIV that she passed along to me. They told me, and I took the meds but didn’t learn anything about HIV. At that age, I had no idea about the stigma or life spans. Having to take medications was like taking vitamins: You don’t know what it’s for, you just do it ’cause it’s good for you.
And then high school hit. I started to hang around kids my age, and everybody was talking about sex, and HIV came up in the picture. I wanted to tell them I was positive, but I didn’t know that much about it to tell and to be able to defend myself. I didn’t want to be looked at as different. So I didn’t disclose. There were so many feelings, and I was so angry for so long. It took me a long time to get over the anger at my mom—that she didn’t tell me herself, when we were so close and shared everything, and then to find out this big thing and to deal with it on my own. I was angry at her, God, myself, everybody. And then there was my grandmother. My grandmother was the primary guardian to my sister and me after my mother passed. My sister, who is not HIV positive, was too young to remember my mother’s death. My grandmother, who is a sweet and caring woman but also very traditional, put me in a box of fear. She made me believe that disclosing my status would change how people treated me, how they looked at me. It wasn’t true, to me—I knew someday people would understand and accept me for me.
When I was maybe 17 or 18, I woke up every day thinking about HIV and [I wanted to make it go away, to pretend it wasn’t there] so I stopped taking medication. I would hide it, pretend. I was young and irresponsible. And I was having sex.
The turning point came with my last two girlfriends. I disclosed to [the first one] right off the bat. Still we were reckless and irresponsible, and she got pregnant. She had a miscarriage, and to this day she’s negative. Second relationship, almost the same thing. She had an abortion. I was sitting in an abortion clinic, and I thought, “How the hell did I end up here? I’m reckless, and the people I’m with are reckless.” That was my wake-up call, the moment of “You have to get your shit together.”
I hooked up with iChoose2live [a youth organization designed to encourage self-esteem and awareness about HIV and other issues]. I thank God for everyone He has placed in and out of my life. He uses who He chooses when He chooses. If it weren’t for me meeting [hip-hop artist] Lee Mekhai at a show in Philly, I wouldn’t have found out about iChoose2live and the founder Shenille Melton. That opened a lot of doors for me as far as reaching the youth.
Since I had already taken a course for certification in HIV Peer Education through Philadelphia FIGHT’s program, Project TEACH, I thought about disclosing my status. For 10 years, my grandmother was the voice discouraging me from disclosing. I was secluded. She drilled into me that disclosing was not safe, that “the neighbors are gonna look at you this way, no one is gonna look at you the same way or accept you.” But as I began to educate myself about the virus, how it works and what it does, I began to lose the fear of disclosing. Then after I linked up with iChoose2live, I came out in a big way through interviews and the work [I did with that group].
My grandmother kicked me out when I told her I would be doing an open interview about me being positive with The Philadelphia Inquirer, which [was published] on September 13, 2010. [At that time,] I had no job, no money, I was struggling. But a lot of positive things came from my disclosure. People emailed me to thank me for being honest about my HIV status. I was intrigued and blessed that my story could help others. I started speaking to groups at the children’s hospital. Kids looked up to me.
I’ve learned that kids in public schools aren’t being taught what they really need to know. HIV is that disease that’s swept under the rug; no one talks about it. And youth are spreading [the virus] because they’re uneducated, misinformed and not being reached out to enough. I honestly think there should be mandatory classes in all middle schools through college for educating about HIV/AIDS [and other sexually transmitted infections].
Positive people my age need to be out there. You can’t have a 48-year-old man talking to kids about this. No one listens. You need someone like me, someone who is living with [HIV]—then it becomes more real. It’s a great feeling to be able to do that. And that’s just me! One person. Imagine if everyone was doing it, if everyone got together. We may not be able to stop this pandemic, but we can inform, educate and empower, and we can slow down the rates of HIV transmission.
I would like to write a book about my life living with HIV and just my life in general. I know my story and experiences within these past 24 years can help educate, empower and change other people’s lives—people of all ages. My story will heal lives all over and most importantly let everyone know the power of God. He’s the only reason why I’m still alive and healthy.
I’m looking forward to the future, staying healthy and changing people’s lives.
Paige Rawl, 17, Indianapolis, Perinatally Infected
She is a high school student, an athlete, a teen. Having encountered and overcome enormous stigma, Paige has flourished—making a place for herself in a world that hasn’t figured out how to make a place for youth living life with HIV.
My name is Paige, and I’ve been positive for 17 years. My mom unknowingly passed it on to me, and she found out her status right before I turned 3. She contracted the disease from my father—we’re not sure how or when he contracted HIV. That’s just the way it goes.
My mom told me I was positive when I was in fifth grade. But I didn’t get it. I took the pills because that’s what you do when you’re young and your mom gives you pills. And then middle school happened.
In sixth grade I confided in my best friend; I told her I’d been HIV positive since birth. Within two weeks, she had told her sister and other people, and they told others, and eventually the whole school knew. Everyone. People threatened to beat me up; they left a note on my locker saying “No AIDS at [school name].” They gave me a nickname: “PAIDS.” They told each other not to drink after me, as if HIV was contagious [that way]. I went from [being] popular to having no friends.
In eighth grade, I made the soccer team. I was going to be part of a team. Then someone told my coach I had AIDS. At our first away game, my coach approached me on the bench, in front of other players, and asked, “By the way, I heard that you have AIDS. Is that true?” I said no, because I don’t have AIDS, I am HIV positive and there is a difference.
I was so upset. This was a coach. Someone who should know. I told mom, who confronted my coach at school. She admitted to asking me and went on to say, “The soccer team could use my HIV status to an advantage, and the other team will be afraid, and I can score goals.” I withdrew from the school and finished out my year with homeschooling.
My mother has been so supportive. And my family. I didn’t have to disclose to them; my mom told them before she even told me. But you need support of different kinds. Since the bullying, the coach, the discrimination, I’ve started seeing a counselor and started taking an antidepressant. It’s OK to look for help, and it’s OK to get help.
I realized that I can help other people too. I wanted to take a bad situation and turn it into something good by helping others know about HIV and the precautions they should take. So I became a peer sex educator and a certified HIV/AIDS educator through the American Red Cross.
I also started looking for support groups and even tried to start one. I searched the Internet, I asked questions, and I was referred to Camp Kindle [a free summer camp for kids living with or affected by the virus]. Meeting other kids [like me] has given me people to talk to, people who can relate to what I’m going through.
These days, I am open about my status to everyone. I take the time to speak to my peers, raise awareness and share my story. Funny, after disclosing to my former best friend in sixth grade and it spreading through the school, it just became easier to tell people who didn’t already know. For the most part, there’s a positive response. The fear that I should not have disclosed my status so soon just doesn’t exist anymore.
I know firsthand that there are still big misconceptions out there about how you can and cannot contract HIV. [We need] more education among youth in the U.S., and there should be more support groups. Youth need to see themselves reflected in what’s taught, in the information they are given.
The hardest part about living with HIV is the stigma that goes along with it. But I have hope. Two years ago, I was the freshman class president, on the JV cheerleading squad and on the soccer team. Last year, I was part of the student government and on the varsity squad. I volunteer, I share my story, I travel. I have hope.
The United States Department of Health and Human Services (HHS) 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 when to start antiretroviral therapy and factors to consider in selecting an antiretroviral regimen. The guidelines also contain new sections on rates and management of various side effects related to the use of antiretrovirals.
The guidelines are intended for use by doctors and other health care professionals when treating HIV-positive children and teens. They were last updated in August 2010.
Key updates to various sections of the guidelines are summarized below.
Start Of Antiretroviral Therapy
Suggestions for when to initiate antiretroviral therapy vary according to age group.
Antiretroviral therapy is now recommended for children five years or older who have CD4 (white blood cell) counts of less than 500 cells per microliter, even if their symptoms are mild or nonexistent. Previous guidelines recommended treatment at a CD4 count threshold of 350 cells per microliter.
The guidelines continue to recommend treatment for children aged one year or older who have normal CD4 counts but HIV viral loads (amount of HIV in the blood) of 100,000 copies per milliliter of blood or higher, regardless of whether or not they have symptoms.
For children under the age of 12 months, the guidelines also 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 Regimens
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.
For children aged 14 days to three years, the preferred initial treatment regimen is now Kaletra(lopinavir/ritonavir) plus two nucleoside reverse transcriptase inhibitors (NRTIs). Viramune (nevirapine)-based regimens are now considered an alternative regimen in this age group.
However, due to recent information on toxicity of Kaletra in newborn infants, particularly premature infants, Kaletra should not be given to newborns until at least 42 weeks from the date of the mother’s last menstrual period and 14 days after birth (see related AIDS Beacon news).
For children older than six years, Reyataz (atazanavir) boosted with low-dose Norvir (ritonavir) has been added as a second preferred protease inhibitor for initial treatment regimens; Kaletra is already considered a preferred protease inhibitor for this age group.
The preferred dual-NRTI regimen backbones for initial therapy in children are zidovudine (Retrovir) plusEpivir (lamivudine) or Emtriva (emtricitabine) (any age), Ziagen (abacavir) plus Epivir or Emtriva (children three months or older), and Viread (tenofovir) plus Epivir or Emtriva (children 12 years or older who have finished puberty).
Two new alternate dual-NRTI backbones have been added to the guidelines: didanosine (Videx) plus Epivir or Emtriva (any age), and Viread plus Epivir or Emtriva (children 12 years or older in intermediate stages of puberty). Viread plus Epivir or Emtriva is now listed as a possibility under special circumstances for children 12 years or older in the initial stages of puberty.
The guidelines do not recommend use of the new antiretroviral Edurant (rilpivirine) in children for initial antiretroviral regimens due to lack of information on dosages for children and the absence of a child-friendly formulation of the drug.
The guide continues to recommend that patients who have never received antiretroviral therapy complete antiretroviral drug resistance testing before choosing which drugs to use for treatment.
Monitoring Of HIV-Positive Children
The updated guidelines now note that transient viral load increases of up to 1,000 copies per milliliter (“blips”) are normal and should not be considered a sign of treatment failure.
The guide also recommends that urinalysis be conducted in children at their first visit and repeated every six to 12 months. Urinalysis usually measures aspects of a person’s urine such as pH, presence or absence of blood or protein, and signs of a possible bacterial infection.
To read the article in it’s entirety, click here.
This blog has featured previous studies and reports about ARVs reducing transmission, and here is one more:
UNAIDS has released a plan to eliminate new HIV infections in children by 2015. This means I will have no more HIV+ babies to advocate for in 4 years! Of course I will keep advocating for the older children, but what a wonderful day that will be when people get in touch about adopting a baby with HIV and I can reply “Nope – babies aren’t born with HIV any more” 🙂 I can hardly wait. See the Global Plan to Eliminate New HIV Infections Among Children by 2015.
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.
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
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.
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.
• 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
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.”
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.