1. What about boo- boos and blood? Do your kids know what to do when they bleed? Are there any risks if my kid plays with a kiddo who is HIV positive?
HIV has never been spread through this type of contact. Bleeding boo-boos are not scary. HIV is killed quickly by contact with air. Any spilled body fluid has to get into the bloodstream to infect someone- which is hard to do. Putting a bandaid happens the same way it does at your house. Intact skin is the best defense against any virus. We teach all of our kids not to touch other people's blood. That is the medical part of me though- it has nothing to do with HIV. I don't want my kids touching anyone's body fluids- that is just gross and unnecessary. They know to come get a grown up if they see blood. There are no risks for children playing together. They can pass on the flu or colds- but not HIV.
2. If I adopt a HIV positive kiddo- what if she gets sick? Will she end up in the hospital from a cold? Do I need to worry about her immune system?
All kids get sick. It is part of life. Yes- you would watch a bit more closely, but it really depends on what his immune system is up to. A cold does not mean a hosptialization. The medications used to combat the HIV also help normalize the immune system. Most of the time the body will fight it off just like it would for anyone else. Of course there are exceptions, and sometimes HIV kiddos do get sicker. Just like cardiac kiddos, or diabetic kiddos, or any kiddo that deals with a chronic medical condition. There are things you can do to help your kid's immune system. Most important thing is frequent handwashing. In our family we use vitamin C and D as immune boosters (especially in the winter). We also avoid gatherings when others are sick. That also has more to do with my not wanting the kids to get sick than the HIV. Sick kids are not fun!
3. How often are doctor visits? How much do the meds cost? How often is lab work?
Doctor visits with the pediatric infectious disease (or PID) doc are every 3-4 months for most kids with HIV. Labs are the same frequency. The medications are usually covered well under insurance, and if not there are medication programs to help reduce the cost if needed. The families I polled pay about 35-80 dollars per month for all the meds. We fall in the middle of that.
4. What if the meds don't work? What if the child becomes resistant to the meds? What about medication side effects?
Drug resistance usually occurs when the medications are not given regularly. Missed doses or frequent medication changes can lead to drug resistance. There are now very sophisticated tests that help the PID if this situation arises. There are several types of HIV and some types respond better to different meds. There are 5 categories of HIV meds, and around 25 different meds total. Research is being done to increase the medication options. If resistance occurs, there are tests for that too. The resistance tests (which are all blood tests) help determine what the next step will be. Thankfully this is rare, and PID's are usually more than willing to collaborate with each other. There is still a great deal of research in HIV. I talked with several people who have kiddos who are drug-resistant and none of them regret choosing this medical need. So far all have found treatment options- different combinations of medications or even research trials. My advice would be to call your local PID and ask them how they would handle this. The meds can have side effects, and like any med it really is dependent on the individual. We have been through one med change because of side effects. There are many medication options out there and finding the treatment regimen that has the least amount of side effects may take time. Part of the quarterly lab work is monitoring liver function and such to keep an eye out for early indicators of side effects.
5. What about insurance costs? Can my insurance deny my child coverage? Will my rates go up?
An adopted child is added to an insurance plan just as a newborn would be. The insurance company is required to cover medical care as they normally would. If you are self employed and pay for private insurance, the rates could change at re-enrollment. If this is a concern, call the insurance company and talk with them. There are special programs for HIV kids, such as Ryan White, that help also. This looks different in every state- so you should call the local PID office and ask these questions. I promise those nurses are experts! They can give you the scoop on how the insurance wants the meds prescribed (monthly through mail order for ours), the assistance programs for medical and medications that are available in your state, and which ones are more of a pain to deal with. I am most familiar with China adoption, and HIV is less expensive than several of the other medical needs (like those that require multiple surgeries or therapy).
6. What is the long term prognosis? Can a HIV positive person marry a HIV negative person and not infect them?
People with HIV have normal life expectancy. Dying from AIDS is pretty rare. A person with HIV can marry, have kids (even the old fashioned way!), without infecting their partner or baby if they are the woman. Magic Johnson and his wife have been married many years, and she is still HIV negative.
7. Are there extra or different visa requirements for adopting a HIV positive child internationally?
I can answer this for China, as that is my experience. I am not sure how other countries handle this. Three days of sputum sampling, a chest X-ray, and a blood test are all completed prior to the US consulate issuing the immigration visa. It does not add travel time to the trip. The cost is minimal.
8. What about disclosing? How about dealing with stigma?
These are the hardest questions, and I will answer them in another post:)
Resources:
http://aidsinfo.nih.gov/guidelines/html/2/pediatric-arv-guidelines/0
http://www.projecthopeful.org
http://www.pkids.org
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