some more resources about HIV, adoption, and disclosure

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sources for HIV facts I've shared in previous posts

Note: many links have changed since I originally posted this. I've updated links below with web archived links, but I will be replacing them with live links as soon as I can. All of the information below, even via archived links, is still current and medically proven.
Whilst HIV may live for a short while outside of the body, HIV transmission has not been reported as a result of contact with spillages or small traces of blood, semen or other bodily fluids. This is partly because HIV dies quite quickly once exposed to the air, and also because spilled fluids would have to get into a person's bloodstream to infect them.
From UNAIDS, the Joint United Nations Programme on HIV/AIDS, on how HIV is transmitted:
  1. Unprotected sex (vaginal, anal and to a lesser extent oral sex) with an infected person
     
  2. Sharing contaminated syringes, needles or other sharp instruments
     
  3. From mother to child during pregnancy, childbirth or breast feeding when the mother is already HIV positive
     
  4. Blood transfusion with contaminated blood
From UNAIDS on how HIV is not transmitted:
HIV is not transmitted through non-sexual day-to-day contact. You cannot be infected by shaking someone’s hand, by hugging someone, by using the same toilet or by drinking from the same glass as a person living with HIV. HIV is not transmitted through coughing or sneezing like some other diseases. There is no need to fear social interaction with people living with HIV.
From the CDC, on ways you don't get HIV:
You don't get HIV from the air, food, water, insects, animals, dishes, knives, forks, spoons, toilet seats, or anything else that doesn't involve blood, semen, vaginal fluids, or breast milk. You don't get HIV from feces, nasal fluid, saliva, sweat, tears, urine, or vomit, unless these have blood mixed in them. You can help people with HIV eat, dress, even bathe, without becoming infected yourself... You do get other germs from many of the things listed above, so do use common sense.
From the CDC, on children with HIV/AIDS:
Infants and children with HIV infection or AIDS need the same things as other children -- lots of love and affection. Small children need to be held, played with, kissed, hugged, fed, and rocked to sleep. As they grow, they need to play, have friends, and go to school, just like other kids. Kids with HIV are still kids, and need to be treated like any other kids in the family.
From the CDC, on playing sports with HIV:
There are no documented cases of HIV being transmitted during participation in sports.  
From the National Institutes of Health, on HIV/AIDS policies in the NFL:
Transmission of HIV infection is likely to be rare in the NFL. This is supported by the fact that in over 10 yr of the AIDS epidemic, the CDC has not attributed one AIDS case to athletic competition... Based on these facts, a player with HIV infection poses virtually no threat to others or himself by further athletic participation in the NFL.
From UNAIDS on HIV+ women having HIV- babies:
In most high income countries the rate of transmission of HIV to babies has been reduced to less than 1% by using a range of medicine and good care for the mother during pregnancy. HIV positive women wanting to get pregnant are advised to do so in consultation with the health care provider to reduce the likelihood of their baby becoming infected.
From AIDS.gov, on HIV medications which have changed outcomes for HIV+ individuals:
In 1987, a drug called AZT became the first approved treatment for HIV disease. Since then, approximately 30 drugs have been approved to treat people living with HIV/AIDS, and more are under development.
From AIDS.gov, on the question, "Can I have children if I am HIV+?"
Yes. If you want to be a parent, having HIV shouldn’t stop you. There are several options for HIV-positive women and men who want to be parents.
[Note from Shannon: more options exist than are presented in this article, and I expect that medical advances will offer even more options by the time our children are adults.]
From University of California - San Fransisco, on a new treatment that can allow couples in which one partner is HIV+ and the other is HIV- to conceive a child the old fashioned way with minimal risk of transmission:
Deborah Cohan, MD, MPH, a UCSF obstetrician and gynecologist who specializes in the care of pregnant women with HIV, has been evaluating the use of Truvada in pregnant women in the U.S. who are uninfected, but whose male partners have HIV... Among heterosexual couples, if HIV levels in the HIV-positive partner remain suppressed with antiviral therapy, the risk of HIV transmission to the uninfected partner appears to be especially small, Cohan said. “It’s officially not zero, because we know of at least one case report,” she said. [The rest of the article, and other research, indicates that the risk is expected to be even lower with Truvada treatment for the uninfected partner, though not enough research has been completed to confirm that yet.]
From the PARTNER study, a large multi-year research project on HIV transmission via sexual activity when one partner is negative and the other partner is HIV+:
When asked what the study tells us about the chance of someone with an undetectable viral load transmitting HIV, presenter Alison Rodger said: "Our best estimate is it's zero."
From The Stigma Project, an infographic of the mid-study findings of the PARTNER study research:


From the National Institutes of Health, in an article by the Research Department of Infection and Population Health in London, on the life-expectancy of people with HIV who are being treated:
With timely diagnosis, access to a variety of current drugs and good lifelong adherence, people with recently acquired infections can expect to have a life expectancy which is nearly the same as that of HIV-negative individuals.
From the NC Bar Association, on the question, "Is HIV status confidential?"
Yes. North Carolina law makes it a misdemeanor to disclose information about HIV infection. However, there are a few exceptions. First, information about your HIV status can be disclosed with your consent. Also, as discussed above, your doctor has to report your HIV infection to the State. The State can inform your spouse.
From the NC Bar Association, on the question, "Do I have to tell the school or daycare if my child has HIV?"
No. You do not have to tell your child’s school or day care provider about your child’s HIV infection. However, if your child has special medical needs, you may choose to disclose in order to make sure those needs are met. Your child cannot be discriminated against in school or day care because of HIV.
From the National Institutes of Health, on the differences in treatment and outcomes for HIV+ individuals in the 1980s vs. today:
In the early 1980s when the HIV/AIDS epidemic began, people with AIDS were not likely to live longer than a few years.

Today, there are 31 antiretroviral drugs (ARVs) approved by the Food and Drug Administration to treat HIV infection. These treatments do not cure people of HIV or AIDS. Rather, they suppress the virus, even to undetectable levels, but they do not completely eliminate HIV from the body. By suppressing the amount of virus in the body, people infected with HIV can now lead longer and healthier lives. However, they can still transmit the virus and must continuously take antiretroviral drugs in order to maintain their health quality.
From the National Institutes of Health, on outcomes for children with HIV in Africa:
More than 95 percent of all HIV-infected people now live in developing countries, which have also suffered 95 percent of all deaths from AIDS. In those countries with the highest prevalence, UNAIDS predicts that, between 2000 and 2020, 68 million people will die prematurely as a result of AIDS. In seven sub-Saharan African countries, mortality due to HIV/AIDS in children under age five has increased by 20 to 40 percent.
From the CDC, on HIV transmission in household settings:

  • This report details the only documented cases of HIV infection within a family in a household setting. In each case, transmission was not in a typical household setting and no precautions were taken to prevent infection. In one, a mother with open sores left them un-bandaged and then picked at her son's scabs, and he contracted the virus that way. (Side note: ICK!) In the second case, a mother provided unhygienic and unskilled nursing care to her adult son who had AIDS and, in failing to wear gloves in transmission-risky situations, contracted the virus. One other documented transmission case was when two adolescent boys who had hemophilia shared razors, and as both cut themselves, the blood of the one with HIV infected the blood of the one without it. In another case, a mom with two sons with hemophilia used the same needle to infuse both sons, which led to the HIV infection of the previously uninfected one. In three other instances, a caregiver failed to use proper precautions, like gloves and/or bandages, when providing care to relatives with bleeding issues or sores in addition to HIV. All of these cases date back 20 years, and I haven't found records of any more recent cases being reported in household settings.
  • This is why I and other HIV adoption advocates correctly state "HIV has never been transmitted in typical household settings." It has been transmitted in the home... but with the good hygiene practices most families without HIV use (aka common sense), it isn't. 

adoption stories


Project Hopeful: I slept with a girl… and I didn’t catch HIV
But then I realized, that if I KNOW the facts, and 1987 still crept in to my mind for a split second, how would my friends react in the same situation? How would I have reacted a couple of years ago?
Parenting magazine: An HIV Adoption Story
The fact is, science and medicine have come so far that "we would rather treat pediatric HIV than juvenile diabetes," says Kenneth Alexander, M.D., chief of pediatric infectious diseases at the University of Chicago. "If you look at how well our medications work, there's no reason not to expect that Sachi will one day see her grandchildren."
People magazine: Enough Love to Go Around
Carolyn Twietmeyer lay in an Addis Ababa hospital bed in July 2008, holding 11-year-old Selah, who had been her daughter for only a few weeks. Swatting biting insects that swarmed through the window, she listened as doctors said there was little hope for her child: Selah had AIDS, weighed a mere 32 lbs., and had long been denied blood transfusions due to limited supply. With Carolyn's blood now pumping through the girl's body, she prayed Selah would be well enough to board a plane to the Twietmeyer home in the Chicago suburbs. "I realized I wasn't the only mother with a sick child in Ethiopia," says Carolyn. "I am no different, just luckier."
Huffpost: HIV Adoption on the Rise in the US
One of the most difficult challenges, for many families, is deciding whom they will tell about the adoptive child's HIV status. Health care providers must be informed – otherwise, under federal and state confidentiality laws, it's entirely optional whether parents notify school officials, neighbors, or anyone else.
An adoptive family’s blog: HIV: Disclosure
People with HIV are not contagious. HIV is almost impossible to "get." In the last 15 years not one person has contracted HIV by living with another person with HIV. It won't happen. You can contract HIV only through sex, sharing of blood (and I mean a lot of it), or from mother to child during pregnancy, delivery, or breastfeeding.
An adoptive family’s blog: Living with HIV {warning: this blog has music that starts as soon as you open it. side note: I’m not a fan of music on blogs.}
Honestly, our lives are not that much different than any other family. The only real difference is that Victoria has to see her doctor every 3 months and take medication each day.
Project Hopeful: The Disclosure Decision
HIV/AIDS is no one’s dirty little secret. The issue of whether or not a family should hide their child’s leukemia, or diabetes, or down syndrome is a NON issue. I’ve never heard anyone talk about it being that child’s story which only they should share. Kids are born with many diseases yet it seems that HIV/AIDS is the singular chronic disease everyone wants to shame kids for having or at least quiet everyone from talking about. No one bats an eye when a mother blogs about her child’s congenital heart defect. No one condemns her for sharing such personal information about her child without her child’s consent.

informational resources


HIV and Children statistics from AVERT charity

An informational brochure from the NC Bar Association: AIDS/HIV Infection and the Law

A report from the World Health Organization on how to tell a child about his/her HIV: Guideline on HIV Disclosure and Counselling for Children Up to 12 Years of Age

Another report on helping a child understand his/her HIV+ diagnosis: Disclosure of HIV to Perinatally-Infected Children and Adolescents

Project Hopeful: A non-profit with the goal of educating, encouraging, and enabling families adopting children with HIV/AIDS