So, here's Katie!
"Our adoption agency has this amazing group of people... families really, from all over the USA (and the world) that are in the process of adopting their sweet kiddos from Ethiopia. Over the past 3 years we’ve connected with many of them via social media and have had the pleasure of meeting a few handfuls of them IRL. We’ve been home with B & M for 17 months now, and with 6 kids, I’m just starting to feel like I’m getting my groove back.
Having adopted two sweet children with HIV, we’ve learned a lot over the last couple of years, and somehow I’ve been asked to share that information so that others may glean from it.
We live in the information age. With the advent of the internet, information is at our fingertips. It is our responsibility to review it and assess its validity based on the authors’ credentials and if the website is trustworthy. Please bear in mind, I am not a physician. I would encourage any of you exploring these topics to contact your local PID (physician of infectious disease) and ask these questions of them as well.
The majority of the information that I’m sharing, is not new. There are a lot of valuable resources we accessed when researching HIV. The majority of it we learned from fellow HIV adoptive mama and advocate, Carolyn Twietmeyer, and the Project Hopeful website. There are many other resources that affirm these details. Many we discovered while doing our own research.
Let’s start with facts.
The CDC states: "Only specific fluids (blood, semen, vaginal secretions, and breast milk) from an HIV-infected person can transmit HIV. These specific fluids must come in contact with a mucous membrane or damaged tissue or be directly injected into the blood-stream (from a needle or syringe) for transmission to possibly occur." (source: http://www.cdc.gov/hiv/resources/qa/transmission.htm#9)
In case you missed it, you can only contract HIV in three primary ways.
- Unprotected sex
- Sharing of needles
- By birth/breastfeeding
With that being said, let’s try and answer some of the questions:
What precautions do you have to take in the home? To glove or not to glove?
We do have latex gloves, wipes, and a first aid kit available should either of our beauties scrape a knee, etc. But honestly, I typically just get a wet paper towel and wipe the blood away, and put a bandaid on... just like I would with any of my other kids. I don’t ever pull out the latex gloves... because honestly, your skin is the BEST barrier available. I just wash my hands with soap after cleaning up after any blood.
Again, from Project Hopeful’s website, “HIV has never been transmitted through normal family living conditions. It cannot be transmitted through casual contact. HIV is not found in sweat, urine, feces, tears, saliva or mucus. It is found in blood, semen and vaginal secretions, as well as breast milk”.
That’s it. So, you can drink from the same cup, hug, and even give a kiss on the lips, without fear.
Again, the degree of risk is often directly related to the person’s viral load. If the child is on a proper regimen of ARV’s the risk of transmission is near zero."
“Viral load is the greatest risk factor for HIV transmission, and lowering the viral load is critical to
interrupting transmission and preventing morbidity and mortality. Studies suggest that the risk
of transmission is near zero when the viral load is below 1500 copies/mm3.”
Will he/she be able to have children? What about unprotected sex within a marriage?
This is an area that is becoming much more of a reality than it ever was before. Let’s look at the second question first. Can a husband or wife with HIV have unprotected sex? Research is showing us the following:
A recent trial has confirmed if an HIV-positive person adheres to an effective antiretroviral therapy regimen, the risk of transmitting the virus to their uninfected sexual partner can be reduced by 96%. For couples in which one partner is HIV-positive and the other HIV-negative, WHO recommends offering ART (anti retroviral treatment) for the HIV-positive partner regardless of her/his CD4 count.
This is encouraging news. ARV’s continue to be a valuable asset in fighting off the HIV virus. So much so, that it can reduce the risk by 96%. Clearly a step in the right direction.
As it relates to having children, there continues to be much discussion and debate over the how, but again, with the development of ARV’s, the answer is yes, a person with HIV will be able to have a child with very little chance of transmitting the virus, if he/she is on an effect ARV treatment regimen.
“Can I have children if I have 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.”
In addition to the information above, research is currently being gathered that may suggest that sperm washing may not be needed. Clearly far from definitive, but this information provides hope that one day, additional measures may not be required for individuals living with HIV to have regular sexual relations with their spouse and the ability to conceive children.
“Draft UK guidance on fertility treatment says that sperm washing may no longer be necessary for couples where the man has HIV and the woman does not. As long as the man is on effective antiretroviral treatment and unprotected sex is limited to days when his partner is ovulating, “sperm washing may not further reduce the risk of infection.”
What is the life expectancy of a person with HIV? When does HIV turn into AIDS?
HIV is considered a chronic but manageable disease. With the advance of medicine, through the administration of ARV’s, those that have HIV are no longer given the death sentence of AIDS that they once were. A person with HIV can live a full life, with no health limitations, as long as their viral load remains low, or even undetectable, thanks to the effectiveness of ARV’s, as well as maintaining a high CD4 count (white blood cells, which fight off infection).
“In general, maintaining a higher CD4 count promised significant extra years of life. Five years into ARV treatment, 35-year-old male patients with counts between 350 and 500 could expect to live to 77—and to 81 if their CD4 counts were higher than 500.”
HIV only turns into AIDS if a person’s immune system is not able to fight off secondary infections due to a high viral load. This happens in places where there are often poor living conditions (ie. disease from unsafe drinking water, lack of proper nutrition), and medications/ARV’s are not readily available.
Who in my small/rural community needs to know?
Regardless of whether you live in a small community or a large one, legally speaking, no one needs to know. Thanks to “universal precautions” you don’t need to tell anyone. Your child can play sports at any level (pre-school to high school) without ever having to tell anyone. Full disclosure is a personal choice.
However, we have found that it can be a great opportunity to educate those in your circle of friends/family. If we don’t stand up and be a voice, how will the untrue information, stigma, discrimination from the 80’s re: HIV and AIDS end? Something that you’ll need to pray about with your spouse/family.
How much will the ARV's cost? Will my insurance company cover the cost of the meds?
This really depends on the insurance company, as well as the medications that your PID physcian prescribes. In my experience, with each of our 2 kiddos on 3 meds each, our copay was $60-$100 per month, per child. But depending on what state you live in, there are some really great programs out there that will cover these fees as well. In the great state of Ohio, we have a government program that is actually beneficial to our kiddos (shocking, I know). It's called the Bureau of Children with Medical Handicaps, also known as BCMH. After calling our county health department, providing income information, as well as insurance coverage available, we were approved for both our kiddos to have full coverage until their 18th birthday. This applies to all BCMH participating providers (including their PID -infectious disease doc, labs, pharmacy, specialist appts. with the cardiologist, eye doctor etc) Therefore, we pay nothing. zilch. nada. for their meds, there are no copays at the PID, no deductibles at the quarterly blood draws, etc. So, be sure to check with your county health department to see if they might have a similar program to assist families with kids with special needs/medical needs.
Also, there are other programs available such as the Ryan White foundation, which assists families with a child with HIV. As well as going directly to the pharmaceutical provider itself (get the generic names of the drugs your child will be taking) contact the drug provider, and ask for a rebate. You can use this rebate to cover the co pays that you have at the pharmacy. At the end of the day, there are lots of ways to get around paying for the meds.
So, what DO I do if my child is playing a sport and receives an injury while on the soccer field, or the wrestling match?
If the team is following proper protocol, they will use universal precautions and therefore there is nothing to fear. Remember, unless they are having unprotected sex, IV/drug needle sharing or birthing/breastfeeding a child, you should have nothing to fear.
“There are no documented cases of HIV being transmitted during participation in sports. The very low risk of transmission during sports participation would involve sports with direct body contact in which bleeding might be expected to occur.”
This is HUGE people. The reason the chance of being infected is so low? It's HARD to get HIV. It's a very fragile virus. Not to mention, if the person with HIV is on ARV's, their viral load is likely super low… making it that much harder to transmit to another person.
“When people take antiretrovirals, the amount of HIV in their body is decreased, making them much less likely to pass the virus to others. If we can get, and keep, more people on treatment, and reduce their virus levels, we can reduce the number of new people who are infected.”
Dr Gottfried Hirnschall, Director of the HIV Department at WHO
We hope that this information has been valuable to you as you prayerfully consider adopting a “positive” child. As for us, we believe it is one of the most amazing things that has happened to our family."
So, there you have it. A little bit of info on HIV adoption and how it really isn't as scary as maybe you might think. If you have any questions or would like to get connected to Katie, please let us know and we'll get you hooked up with the right people to answer your questions.
And Katie mentions Project Hopeful above, they're an awesome site for information, here's a fun video from there too to make your Friday more enjoyable.