As we see more and more HIV+ children become available for international adoption, we thought that it would be beneficial to hear first hand experience on parenting this need. So we asked prospective adoptive parents what they really wanted to know about having a child with HIV; then posed those questions to both adoptive parents and their HIV+ children.
In this third post – in a three-part series – we posed questions to Nurse Practitioners, Infectious Disease Doctors, Pharmacists, and RNs who have experience in working with HIV+ patients.
Part Three: From the Medical Professionals
1. What are the typical side effects of medication?
Abdominal pain, upset stomach, diarrhea, sleep disturbance, low HGB, low ANC.
It really depends upon the medication. Most children do very well with HIV medications with no side effects. However some children have side effects that are usually very manageable or temporary like upset stomach and or diarrhea.
Side effects vary and meds can be adjusted to find ones have minimal to no side effects. The biggest problem is that the virus can quickly develop resistance so the medicines have to be faithfully taken everyday.
Nausea stomach upset diarrhea
Nausea, bowel issues, potential kidney damage, headache, loss of appetite • Nausea, vomiting, vivid dreams, lightheadedness/feeling flush, rash.
Newer agents often minimal.
Nausea, constipation, dizziness.
GI (nausea diarrhea), autoimmune, high triglycerides.
Nausea, headache, dizziness, possible diarrhea or upset stomach in the first weeks.
It totally depends on the medication. Some weight loss, possible mood changes, hair changes.
Nausea, vomiting, diarrhea, constipation.
Nausea vomiting weakness fatigue.
Depends on the medication.
Rash, nausea and vomiting, headaches, other rarer side effects may also occur. Physicians monitor very closely for side effects however, and the meds are usually well tolerated.
Thankfully, this is so much easier to answer now than even in just the last 5-10 years! Medications are much easier to tolerate now. However, for children, depending on their age, the recommended regimens vary, and as a result so do the side effects. Most common across the board are fatigue, headache, nausea, and these should resolve within 2-4 weeks after starting. Each regimen will have its own set of possible side effects, but in general, once someone has been on their meds over a month, the side effects go away.
2. What long term medical effects should be expected from medication and also the virus itself?
No long term side effects, hopefully we will get you on a regimen that works. Long term effects of the virus if treated are minimal, if untreated, they can be life threatening.
Most children with regular access to healthcare and HIV medication can be expected to live a normal life span. They can go on to have careers and families as well. There are many studies currently underway to better understand the potential long term effects of HIV medications. The data we have so far indicates that they are safe and that the benefits outweigh the risks. That being said, it really depends on several factors such as each individual child’s past health history, access to HIV treatment, etc. If you are considering adopting a child with HIV that has NOT had much access to healthcare or HIV treatment, it’s important to be prepared that they may have other medical issues that will need to be addressed. It’s important to be prepared for that.
Long term side effects are less know with patients who will have HIV from childhood into adulthood. The life expectancy is longer. The early the disease is treated after birth, the less damage to the body. Long term side effects are better studied in adults. There are known issues with abnormal lipid production and bone health.
Potential organ damage, lipodystrophy, neuropathy.
Somewhat still unknown diabetes, liver issues, kidney issues, possible resistance.
Minimal as long as managed appropriately with medications.
Lower viral load if meds work properly.
Possible heart disease, weight changes, diabetes, liver disease.
I worked with children/pregnant women. In adults, I saw far fewer effects from the medication in adults. The largest long term effect I saw in kids was Lipdystrophy and hair loss. I saw very few long term effects from the virus because we Case Managed our children with HIV diagnoses and they were mostly undetectable in terms of viral load.
Nausea vomiting lethargy weakness skin sores- late stage HIV.
Heart disease liver disease lack of strength.
Long term issues include diabetes, renal failure, liver failure, heart failure, bone weakness, lipodystrophy, high cholesterol. It’s hard to tell what’s from the virus and what’s from the meds sometimes.
Long-term effects of the virus: If the virus is detectable (meaning the medication is not working right, or is not being taken every day like it should be), it will continue to make copies of itself and will cause the immune system to weaken. Over time, if left this way, the immune system (measured by CD4 count) will drop to 0 and the body is at major risk of infections, which ultimately can lead to death.
However, with good adherence to medications, the virus should be suppressed (or “undetectable) and PREVENT this from happening! Long-term effects of the medications can be bone mineral density loss, kidney issues, and jaundice, among others.
Thankfully, providers know which regimens cause which long-term side effects and will monitor the person throughout their lifetime for each of these. Anytime one is detected, we have the option of treating through it, or switching to a different regimen.
3. Many insurance companies refer patients to specialty pharmacies to order HIV meds, any tricks you have in dealing with mail order/speciality pharmacies?
Having a personal connection with them. Using the co pay assistance cards is also helpful, but really having an insider is the most helpful.
I have had to deal with this countless times. I have found that it is getting easier overall. The main thing is to be persistent, take notes and ask for clarification about the process. Again, I haven’t found this to be a huge problem but yes, it can come up.
Ask for a case manager.
Get an HIV Medical Case Manager from your local AIDS Support Organization who can help facilitate the process.
Give yourself a week before, always make sure you have refills, when you call to reorder. Ask if they can mail to a local store Walgreens and CVS can, this allows more if a relationship with staff.
Don’t wait for your med to arrive, call them if you b think it’s taking longer than it should.
Order early, before you run out of meds. We referred patients to mail order pharmacies when they were in rural locations. If you can, set up auto-refills.
Work with case management or SW at the hospital who routinely handles HIV patients. Have a case manager assigned through your drug insurance company as well so that one person who knows you is doing your claims.
I am a pharmacist and I work in a specialty HIV pharmacy and we STILL have issues with insurance companies requiring patients to go through mail order. It is extremely frustrating as our patients would prefer to fill locally with us. However, some insurance companies allow patients to “opt out” of mail order (but not all). Using terms like: “I’m concerned about my privacy with mail order” or “I don’t feel comfortable not having a pharmacist in person to speak with regarding any questions I may have” will help patients opt out. Despite all this, insurance companies tend to have their way and get to dictate where a patient fills their medications and it’s horrible. There is legislation that is continually being brought up at the state-level and federal-level to fight for the patient’s right to choose pharmacies. There is lots of opposition (as expected) from major insurance companies, so some of these bills have died, but I encourage you to find out if any are coming up at the state-level during the legislative session and call your senators to tell them how important this is for you!
4. Many parents/patients consider disclosure the hardest part about managing HIV, what are your thoughts on disclosure? What do you recommend people do?
I feel that patients should be told their diagnosis at a young age and educated on the effects of taking medications and taking care of themselves. I understand a family’s desire to be private and I believe that is up to the family to talk to the child about not telling others, but I think it is important to tell the child what they are dealing with.
Our recommendations about disclosure are as follows:
1) Be open and honest. It is important that children know their diagnosis in an age appropriate time frame. Remember, they take their cues from you. If you have shame about their diagnosis, then they will. If you are open and have a positive frame of mind, they will too.
2) Secrets are exhausting and emotionally difficult to keep. In our 20 years of experience we have found that children handle it very well!
3) Avoid a shamed-based approach in talking about HIV. There is nothing to be ashamed about- ever.
4) Be prepared to educate people about. It doesn’t have to be your job to educate everyone – but if you are comfortable doing that – it only takes a few minutes to let people know that HIV is now seen as a very manageable chronic condition just like diabetes or asthma. And that people who take their medicine regularly cannot give it to anyone else.
Training and adherence to standard precautions ensures that school should handle blood as if it is contagious. There is no need to inform people in the public. It is up to the family to decide when and who will be informed. Of course, tell medical personnel. It is illegible to be a known carrier of HIV and not inform sexual partners, so as the child grows they need to know about this responsibility.
If the child is younger I would only tell those that need to know and let the child decide as they get older.
Disclose. The more people who disclose their HIV positive status, the more normative it becomes and the less stigma can flourish.
It’s always at the patient’s pace. Rapport is so important, let the patient lead. If the providers are aware, it’s the patient choice until it is time to discuss sex.
Encourage disclosure with medical professionals, limited disclosure to family and friends.
That’s a tough one because there’s still so much misinformation out there, even among health care professionals. I would disclose on an as needed basis and educate the important people in our lives.
I don’t recommend anything, ever. I explain that this is an individual choice for each family. I do discuss pros and cons of each one. I.E. Pro to disclosing, the message sent is that this diagnosis is no big deal. Pro to NOT disclosing, less issues with stigma due to ignorance. It is not my place to actually recommend to families what they should do.
Education is key. Educate how it’s transferred and disclose how child got the virus if you choose to.
I think disclosure should be only when the person is comfortable disclosing it, but also when the potential of infecting another person is possible, like a sexual partner.
Disclosure only on a need to know basis. Would treat it the same as any other disease, I would tell those who are at risk of transmission.
Definitely disclose to healthcare providers including dentists. Schools and daycares are tricky. Legally there’s no obligation to disclose to them. All have had policies in place for decades mandating that they need to use universal precautions. The stigma against a child whose family discloses HIV status is greater than the practically non-existent chance a child will transmit HIV to anyone. And it will follow him or her forever.
We tell patients that we encourage disclosing to at least 1 person so as not to ‘bear the burden alone’ and to have a support group. The patients that don’t do this tend to struggle emotionally a lot more than others. However, there are lots of protections for HIV patients and they do not have to disclose this information to their employers, schools, etc. We encourage people to tell those they love and trust when they are ready. It is a hard thing to do, but we encourage our patients to bring family to the clinic when disclosing so that we are there to help facilitate discussion around HIV. This usually makes it less of an issue as the hard questions can be answered right away. It also really helps people see that HIV is not a death sentence as it used to be in the 80s! It is equivalent to someone having Diabetes and can be medically managed.
5. Many parents are worried that they will not be able to afford the medication. What programs, if any, are available to assist with the costs?
Copay assistance, ADAP, health insurance, I feel there are many options.
There are many programs available to help pay for medications. Most if not all insurances and Medicaid cover children living with HIV. This is not usually an issue at all. Of course with the changing political environment, it’s hard to know what the future holds.
Most insurance plans cover the medication after their deductible is met.
There are prescription assistance programs and HIV medication programs.
Every state and US territory has an AIDS Drug Assistance Program (ADAP) but every state has different policies in regards to what and who is covered and at what level.
Every HIV med except Viread has a copayment program or patient assistance program. Also, every state has an ADAP ( AIDS Drug Assistance Program) they are each different but worth investigating.
States health programs are a great resource, also health department; may also be drug company savings available.
Depends on the state and insurance. We use hip program, and med assist.
Children’s special health care services, most pharmaceutical companies have discount programs.
We received Ryan White Grant funding. None of my patients ever had to pay for meds. SO many programs are available. If a patient didn’t qualify for one, our social worker stepped in and we found another one.
There are many medication programs that provide free and low cost meds. Too many to list here. Some are gov’t programs, most are through drug companies.
There are lots of programs available! This should never be an issue. In Medicaid expansion states, patients with HIV should be able to qualify for medicaid. Each state should have HIV case managers available to help the patient navigate the insurance system and help them pick out an insurance plan if they are over the income limits for medicaid. If there is no way to get insurance, there are patient assistance programs through all of the manufacturers. If someone does have insurance and has a high copay, every brand name drug manufacturer offers a copay card (available online) that will bring the cost to zero. As a pharmacist, we very very rarely see people having to pay for their HIV medications. The most important thing is to utilize specialized HIV case managers to help.
6. What do you want to say to a parent considering adopting a child with this need?
I believe that for the most part, they are healthy children. But I also think it should known that they have different needs that children who are uninfected. Giving medications several times a day can be challenging, but it can also get easier with time. I also believe that parents should be aware that HIV positive children need to be immunized, they are immune compromised and this is an important part of their health, including immunizing with the flu vaccine. They are great kids and it is a very manageable disease, but I do believe you need to be aware that there are some challenges that come along with the disease and this often includes many medical appointments.
Don’t hesitate! We have seen so many wonderful families with beautiful children who are navigating their chronic condition just fine. Having HIV should not be a reason to not adopt. Educate yourself about the condition, obtain as much paperwork and background information as you can from their country and feel good that you can provide a wonderful home for these children. It really is very manageable in most cases and well worth any challenges you may face!
As in all adoptions, make sure this is what God is asking you to do. Make sure you can ensure a child takes daily medicines and get regular check-ups. No child comes with a guarantee of perfect health. We hold our children in open hands knowing God is the author of their stories. HIV is a chronic disease that needs medical management.
This need is not as scary as it sounds or as stigmatized as it used to be, most can live a relatively healthy life.
HIV is an extremely manageable chronic condition. People who have HIV and are adherent to their medication have almost exactly the same life expectancy as someone who is HIV negative. Also, Anti Viral Retro Therapy medications are constantly improving. Many are available in a once a day single pill with limited side effects.
When children are younger, it’s quite easy to manage and economical compared to other chronic diseases. I say there is no reason not to!! There are enough resources available that your energy can be focused on raising and loving your child, not so much managing an illness that is no longer life threatening.
Discuss with pediatrician first, see if insurance covers, what state assistance covers, and what local supportive resources you have.
Sounds great! It’s doable. The key to treatment will be maintaining compliance.
(I don’t have a child HIV but would adopt a child with HIV in a heartbeat.). A child with this need will need medication management but live a healthy and normal life.
If you feel you can handle this need, as with any need, go for it!
This is easier to manage, medically speaking, than Juvenile Diabetes. The stigma is not easy to navigate. People are still ignorant. Consider your community, but medically speaking, your child will live an amazing life.
With medication these children can live a long healthy very normal life. I was part of the HIV research done at TX Children’s hospital and when babies are born to HIV+ mothers they are treated with antiviral at birth and continually for first year of life. These children were testing negative and continued to test negative. I truly believe, with all the research being done we may soon find a way to eradicate the virus.
I would recommend educating themselves about HIV/AIDS. Meet with other parents for support and advice.
HIV used to be a death sentence. With proper medical therapy now people can live a relatively normal life expectancy.
I feel the best parent for a child with this need is detail oriented and organized with meds and appointments. The parent should be a strong advocate for their child as well. The future of HIV treatment options is bright, there’s never been a case of household transmission through normal activities like toothbrushing and bathroom use.
HIV is scary to most people, but it shouldn’t be. We have excellent regimens for HIV and they keep people healthy as long as they are taken every day. This is no different than someone on medications for Diabetes, high blood pressure, or low thyroid. Yes, there are social issues surrounding HIV, however the medical community is striving to change the misconceptions around persons living with HIV. Your child can live a normal life, be healthy, and enjoy all the wonderful things a family has to offer them. Do not be afraid! 🙂
If you haven’t already, be sure to read the other posts in this series here!
– guest post by two mamas who are parenting children who are HIV+