Wednesday, January 10, 2007

HIV and adoption FAQ

Do you have any references, books, websites, etc. that you would recommend people read in order to learn more about HIV?

I am going to answer this in a separate post. I won't make you wait. Its just that it's a list and I am afraid people won't read the rest of the questions below if I post it now.

What is the prognosis for kids who are HIV+ in the world today? I have read in several places that HIV is now considered a chronic and manageable disease. Is this true in most cases?

Children living with HIV in parts of the world with easy access to good health care, ant HIV medications (AKA Antiretroviral medications, ARVs, and HAART or Highly Active Antiretoviral Therapy) have an excellent prognosis. Since HAART began in 1996 we have seen a rapid decline in the number of people with AIDS in many parts of the world. It has increased the number of people living with HIV. This is because without HAART HIV will progress to AIDS. There is a window of 7-10 years (sometimes shorter and in some people that window is very long) in which your HIV stays well controlled without medication. Once your immune system hits that tipping point so to speak- and the number special helper immune T Cells (CD4 cells) declines so low that your body becomes susceptible to numerous infections it once could fight off easily (opportunistic infections) you have progressed to full blown AIDS. Many many people who started this therapy 11 years ago are alive today and doing well with their HIV so well controlled it is not even detectable in their blood. This means their immune system functions almost like people without HIV. It means they can go to school, college, get married and have babies- and they are doing all of these things and more. Many of you, if asked, would say you do not know anyone with HIV, but the reality is that many of you do and you just don't know it. We care for many kids in Colorado, Wyoming, South Dakota, New Mexico, Arizona, Utah and Kentucky! They are all in schools with kids like your kids and you would never know what they are walking around with. But, you don't really need to know, unless it's someone you are close to and you can offer help with childcare when they travel to see the HIV clinic every three months.

What are some of the common medical complications that HIV+ children have to endure?

Kids without treatment can have a variety of Opportunistic Infections which include but are not limited to Shingles (or herpes Zoster) Condyloma (or warts), fungal infections like thrush, yeast infections, fungal infections in their brains like Coccidiomycosis, Chronic Bacterial infections like ear infections, pneumonias, meningitis and other brain infections, cryptosporidium syndromes that involve chronic diarrhea, and cause wasting are common. Chicken pox that can be life threatening, rashes, poor growth, issues with brain development, Cerebral Palsy, heart disease, diseases that are worse in other parts of the world like TB, Typhoid and Malaria.
Click here for more on this and a guide to HIV

BUT with meds we see some side effects to the meds like pancreatitis, Hepatitis (liver abnormalities) Kidney disease, and even kids who are well controlled will still get Zoster (shingles) sometimes. Other side effects to the meds include elevated triglycerides and Cholesterol- so having a good diet is very important. Most of the issues kids who are on meds deal with are related to the meds and not related to the HIV. Unless you count the stigma of living with a disease that so many people are still so ignorant and fearful of. That is often described by families as the worst side effect of having HIV. Not the HIV, Not the meds, Not the visits to the doctor every there months, but the STIGMA of the disease.

Do you have any advice for adoptive parents who are considering adopting a child who is HIV+?

I think you want to talk about it with people around you whom you reply on for support. Expect them to voice concern, and even expect them to be angry with you for making a choice that will affect them. And listen to them..and when they are quiet tell them you would love to answer all of their questions...if they have none - ask for them. Say "I know you are probably concerned that our child might come home and be very sick and then die." (Its good t ask this one for them first- its not the first thing in their mind- but it will make them feel better that you assume this is their first concern.) You can then relay what we do for kids with HIV today and how kids born with this 25 and 30 years ago are in medical school, college getting married and having children who are uninfected.

Our rate of transmission in our country for women who are well controlled on medication is an amazing and miraculous less than 1%!!! then you can ask "for them" the question that they really want to ask which is "I am sure you are wondering if we are putting ourselves and those around us at risk?" (again you couch this as their concern for you- you don't mention them- it feels much less like an attack this way) and you can explain the transmission of HIV and how impossible it is to get from regular contact. After you have discussed this with those you love and have gained some support you will feel better about moving forward. Seek out the providers you are likely to use for their care and talk to them educate yourself, talk to other families who are affected by HIV, not just adoptive families but speak to moms who are living with this disease and raising children with and without HIV.

Then find one of the few courageous and innovative, the few truly caring, those on the leading edge of adoption, the frontier- contact those agencies who will facilitate and adoption of an HIV positive child. And every agency that does write them a latter thanking them for reaching out to those kids who needed it more than any others. And thank them for the families willing to bring home a child with HIV. Then choose the agency that works best for you and your family, raise money, and adopt just like you would any other child. (Except there is one more step in this process which I can cover on a different post)

How can I locate an Infectious Disease specialist or an HIV specialist in my area?

The Internet is a great tool for this. The Ryan White Care Act is a great resource with listings all over. Calling a children's hospital that is near where you are and asking them what they provide and what they recommend for children with HIV, seeking out an IMPAACT site (formally known as the PACTG) because these sites are federally funded and have access to treatment trials that other sites do not. Checking the IDSA webiste. Find a clinic that is multidisciplinary. You will want a social worker or case manager- its helpful if there is a nurse practitioner who works with the physician and we have a dietician, neurodevelopmental psychologist, social worker, NP, MD, Pharmacist, child life specialist and a general pediatrician. We are blessed in our clinic to have all of these people committed to the families we care for.

One of the biggest worries I have is not about the medical aspects of HIV, because I think we can handle those (as parents you deal with what you have to in that regard, there are no guarantees of health with biological children either), but I am worried about the social aspects of HIV. It is still a disease that carries such a negative social stigma how can parents become prepared to deal with these social issues? Who do you tell? Who do you not tell? How do you deal with discrimination against HIV+ children?

This question is why this post sat here unpublished for so long because if I really had this answer we would not even be having this discussion. I am going to answer this one in a separate post too. Because I feel it’s so important, and I want to answer it well.

Do HIV+ children pose a risk to other children in their homes, schools, churches, etc.?

None. (read that period aloud) There is no known documented case of a child passing HIV to another child in school or church. There is one famous case in England with two boys who both had Hemophilia and one had HIV and the other did not- they do not know how the other got it but the theory was the shared a razor- even this would pose a low risk unless the razor cut the skin of both kids caused a lot of bleeding (remember they had hemophilia) and they used the razor immediately after each other. And today- with HAART when the viral load is less than detectable the risk of transmission is almost nothing- it's why a baby can be born through a bloody birth canal- be covered in blood and not get HIV. HIV is very hard to get. Its not a strong virus in that it only lives a very short amount of time in air...dies within seconds in air. Unlike Hep B, which is, a sturdier virus and can live a long time in a needle in the right conditions for instance. HIV is not easy to get. We don't talk about that all the time...but its hard to get under normal circumstances- things that make it easier to get are unprotected sex with someone who has other sexually transmitted diseases- or if you have other sexually transmitted diseases. Studies are showing that concurrent drug use with things like METH makes it not only easier to get HIV, but may be helping HIV progress to AIDS much faster than in a healthy non-substance using person.

My friend is a nurse and I couldn't believe her response to my comment that we might consider an HIV+ child. At first she asked me why we would put our family at risk. How can we educate ourselves about HIV and the risks...and then how can we
educate our friends and families to understand the issues?

I am always amazed at the health care professionals who are for some reason more afraid than the layperson. I have pediatricians who tell a mother their child has AIDS because the HIV antibody that comes back on a newborn is positive. That test only looks for mom's antibody- so its only a test of a mother- can you imagine how devastating that would be to be told that in error?

I will be posting some great websites to help educate yourself. I think the best is listening to people who live with the disease talk for themselves Click here to view the Positive Project by Tony Miles. I know this man and this is an amazing project where you can hear and see the stories told first hand.

I think when people ask how you get HIV- many times they are asking how do we NOT get HIV. Here is how you DO NOT get HIV:

"Studies of families of HIV-infected people have shown clearly that HIV is not spread through casual contact such as the sharing of food utensils, towels and bedding, swimming pools, telephones, or toilet seats. HIV is not spread by biting insects such as mosquitoes or bedbugs." This comes directly from our governement's Infectious Disease agency (NIAID).

Should people share that they are adopting an HIV child or keep as a need to know basis?

This is obviously just my opinion. This will depend a lot on whom you are and your community. I feel that you should not announce it to everyone because there are privacy laws for a reason. They are there to protect your child form discrimination. I have three types of families- I have the ones who are so open, give talks, the whole school knows, the child becomes the poster child for HIV in their area...Then I have families who only disclose to people close to them. the kids identify a few best friends whom they grow to trust and they tell, only the school nurse and principal knows or they have not told the school at all (most of my patients do not disclose to the school), then their are families who tell no one. and I mean no one- including the child with HIV. 12 and 13 year old walking around with HIV who do not know.

None of these scenarios are perfect. But I can tell you those kids who have the most trouble are often the first and third group. Kids don’t mind being the poster child when they are you, and families often benefit- they can make money to pay bills, raise awareness, put a face to the disease- so much of that is so important to decreasing stigma as a whole and so for that I have to applaud these families who attempt to normalize and educate others. But- in most cases those kids become teenagers who do not want everyone to know they are HIV +. they want to be "normal". They want to move and start over. They are tired of being treated differently. They stop taking meds in order to make themselves feel normal. And In smaller communities this can really take a toll on a child-there are also community members who burn out from the constant attention to the cause.

You have to find what works for your family. I think all children should be told the truth as they can understand it developmentally. This has been studied and showed it helps so much in adherence and well being. But do not be short sighted. What you disclose you can never take back so choose carefully how and when you disclose your child's status and just as you would not run round and tell everyone your child had Diabetes or Hep B or about their conception- you would not share this. Every book on adoption talks about how children need to own and be in charge of their own adoption and birth story and this would go hand in hand with that.

Did you visit AHOPE when you were in Ethiopia? If so, can you tell me about the kids there?

I did! But again I will never get this posted if I answer this now- I will do another AHOPE post very soon.

Does health insurance cover the child or do they consider it a "pre-existing condition?"
It is not a preexisting condition that would preclude an adopted child from being covered.- you adopt and your health insurance must cover your child no matter what- if they have a cleft palate or a heart defect or Hep B they have to cover it. It's your child.

Good questions!


Laura said...

God calls us to do great things in this life and it is up to us to hear Him or ignore him. You have clearly heard His call for your life.

Brianna Heldt said...

Thank you so much for posting these questions and answers! We very well may consider this one day (right now I think we're good what with three two-year-olds and a baby due in four weeks!). Thanks so much for raising awareness and putting the truth out there.

apriljacobson said...

I have another question. What is marriage and child-rearing going to look like for HIV+ children in 20 years? Will they only be able to marry other + people? I know about not transmitting to baby through childbirth, but what about a man who wants to marry someone not HIV+? Is this possible? I think that I am most unsure about navigating these issues once my child became a young adult and what their lives would be like in reality (assuming that HIV/AIDS prejudice was the same as it is now). Thank you so much for the info- it was exactly what I have been looking for!

Chanda said...

Thank you so much for posting these answers! For some reason, finding answers to these kinds of questions have been so difficult to get from medical professionals in our area. We definitely appreciate your willingness to share your experience and promote adoption of these often forgotten children.

I second apriljacobson's question above....I agree - navigating those relationship/marriage/children issues in the future might be quite complicated.

Thank you again - I am looking forward to reading more!

5KidMom said...

This is such valuable information! I feel like there should be billboards put up around town with your blog address on them. People NEED to learn this!

You are providing a great service here. I look forward to your future posts. 8^)

Avery said...

thanks for posting on this subject... very well done

Raskell Party of 8 said...

THank you, thank you. I love you my friend. You have such a passion for this and God definitely is using it!

Avery said...

you ever coming back?

dormant blogs get removed from my blogroll!!!! you don't want that now do you?

Steiners! said...

I'm late to the game, but thanks so much for posting this. I'm adopting a girl who is positive from Uganda and needed some encouragement today!!