In this section, Dr. Painter explains that the growing cause for being in the orphanage is not illness, but refusal to take the various AIDS drugs.
Resistance to the drugs was strong in many children, because, according to the childcare workers, nurses and former ICC residents I interviewed from 2003 through 2005, (2, 3) the drugs made many children immediately ill; severe nausea, vomiting and diarrhea were the predictable after-effects of ingesting the various chemicals.
Failure to take or enforce the drugs was and remains sufficient reason for the state to remove children from parental custody and remand them to the ICC, or to a foster home. This was not only the case with the mothers and guardians I have interviewed in New York, but also in Canada, California, and Europe.
Listen to Adherence
Dr. Painter: I often say that what we’re asking of our patients and our families in our recommendation, um, for their regimens and their level of adherence is actually something that is beyond 100 percent – patients are being asked to take all of their medicines all the time, whether they have them on hand or have run out, whether the pharmacy has filled and delivered the script, whether the clinic has responded for a request for a refill promptly, whether the medicines make you sick, whether you’re at home or away, whether you’re ill with an inter-current illness.
For children, it’s additionally challenging because an adult or an older child or adolescent can make the decision to take medicines, um, based on, um, what they know about their diagnosis, what the medicines do, um, for children who are younger or children who are developmentally delayed, or children with mental health problems, um, that um, independent decision to adhere to medicines may not be possible and so then you’re, um, faced with a situation of a caregiver or parent needing, trying, being advised to give medications to a child who, he doesn’t know or is not able to appreciate why they need medicines, why they need to take it all the time, why they need to take it if it tastes bad or upsets their stomach, um, it can be difficult.
So, we are having an increasing number of, um referrals over the last, um, oh several years for, um, primarily for helping to assess and intervene with medication adherence difficulties that patients and families are experiencing.
For children really, you’re not really treating an individual patient – you’re treating the individual patient plus the, um, their family or, caregiver.
LS: How do you get people to adhere?
In this segment, Dr. Painter describes the chief problem of the drugs as their “significant, lingering bitter aftertaste.” This was clearly code for what was described to me by patients, nurses, child care workers as the daily and hourly vomiting, nausea and diarrhea, that occurred after taking the drugs. (This is the same description offered by many adult gay men who are on the drugs).
Dr. Painter clearly explains the processes of forcing ‘adherence’ in children who are reluctant, or unable, to swallow the medicines. The First “intervention,” as she called it, is an “N.G. Tube,” a tube inserted through the nose, and pushed down the throat into the stomach, through which the ground pills are given.
For continued refusal, a “G-Tube” is considered appropriate. In this, a child undergoes a surgery in which a tube is inserted through the abdominal wall directly into the stomach. From then on, the ground drugs are pushed, by syringe, into the stomach. “Do not refuse,” seems to be the message (4).
Listen to G-tube
LS: I know that the medications are hard to take and I do know that they have loads of side effects, I think that’s kind of well established [slight laugh].
Dr. Painter: The issues that come up with kids with hard to take is sometimes the formulations; a young child can’t usually swallow, um, large pills. Many of the HIV medications, like protease inhibitors are actually large pill size…
Dr. Painter: …Horse pill size, and often multiple pills, um, so sometimes the formulations available for children who can’t swallow, um, pills or who can’t swallow larger pills are a liquid or a powder formulation and they, um, sometimes are not very palatable.
LS: hm. How do you get….how do you…
Dr. Painter: [Laughs] ...for a medication called Ritonavir…uhm…
LS: ...Ritovovir is…
Dr. Painter: ...Ritonovir is a protease inhibitor, one of the first, um, available in a pediatric liquid formulation, uhm, it tastes very mediciney, um, and it has a significant, sort of bitter, lingering aftertaste, um, that persists.
People do a variety of things, um, Mixing it straight up with Hershey’s chocolate syrup or strawberry syrup, or um, placing it in some other palatable food, um, some children can, can with, um, you know, habit become used to and accepting of a medicine that’s not, um, so good tasting and others can’t.
For some, um, cases, it can be appropriate to consider if a child can’t tolerate, um, or can’t swallow, um, medicine, um, whether it would better administered, um, through a G-tube a gastrostomy tube.
So for some cases, for, um, younger children with more significant um, illness, um, that’s an appropriate, um intervention to help them comply with medication.
LS: Is that the nose one or the stomach one?
Dr. Painter: No, that’s’ the stomach one. An N.G. tube is a naso-gastric, it’s appropriate for short term interventions, um, but it has to be changed approximately weekly from one side of the nose to the other with a new tube to um, minimize the side effect of sinusitis infection, um, and um, it has to be checked each time you use it by listening as you push through the tube – that the air bubbles you’re hearing are in the stomach area, and not into the lung area, because it can become, um, displaced.
LS: Oh my…
Um, So that’s an appropriate short-term intervention. A G-tube is a from the outside skin through a small opening to the inside of the stomach.
LS: Now how does that…When I was looking at the brochure that I have, I know I saw that and I had to go ask, uh, and do some research and say ‘what’s this?’ How do…when are are kids, uh…when is it deemed that…
Dr. Painter: …it’s appropriate.
LS: Yeah, necessary or appropriate?
Dr. Painter: I think that When other interventions to help a child take a medicine by P.O. [parenteral oriface], or by mouth, have failed.
And it’s um, deemed important that a child be able to regularly adhere, receive a medication.
Very often, sometimes the needs for administering medications may, um, occur with the additional need to supplement the child’s nutrition – so some children’ in addition to receiving med through a G-tube, receive supplemental formula feedings, through a G-tube if they have failure to thrive.
LS: How do you put in a tube?
Dr. Painter: How do you put in a tube…Well, you, um…a surgeon does that – and it’s fairly a well-tolerated and relatively simple surgical procedure.
A percutaneous endoscopic gastrostomy placement, or PEG, is a procedure, where, in the O.R. [operating room], under anesthesia, the surgeon, um, passes a endoscopy tube which allows them to visualize the inside of the stomach and, um, determine correct placement for the tube and then from the outside, um, while they’re visualizing the inside of the stomach, they, um, place the tube surgically…it’s a, a…generally well-tolerated procedure.
LS: So They cut through the stomach lining—or…?
Dr. Painter: Well, right, yeah, you’re actually cutting through the skin, through the abdominal wall musculature, and then through the um, stomach. It creates a very small hole, perhaps the size of in diameter, a quarter inch. It takes several weeks to heal well, so it’s initially a bit tender.
But then a small tube is held in place through that stoma through that opening, and on the outside is basically the area where you can connect a syringe or a feeding tube, and when not in use can be closed.
Um, it only extends from the skin – I don’t know if you’ve had the opportunity to see, um, any – less than about a half and inch. It’s often – some typed of gastrostomy tubes are called buttons.
And then on the inside, On the other side of the tube is a device that holds it in place on the inside of the stomach, keeps it from coming out, um, through the stoma or the small hole between the outside and the inside of the body.
So…in some cases that’s a balloon, a small, it’s called a balloon, but um, part of the device on this inside is filled with sterile water to expand to a size that can’t be pulled back through the stoma to the outside.
LS: So, … uhh… you’ll forgive me.. I’m not a surgeon. it makes me a little grossed out but, um, uh, now so if a kids refusing to take, or won’t take or can’t take the medication, they might get one of these.
Dr. Painter: Mm hmm, in some cases.
[end of segment]
In this section, Dr. Painter offers the justification for the practice of forced and surgical drugging. It is based on T-Cell and Viral Load counts, which Dr. Painter describes as based on an “evolving understanding.”
Dr. Painter at first deflects the idea that the primary drug used in Aids patients, AZT, is extremely toxic, but then states that one of the problems it causes is “bone marrow suppression.” That is, it destroys your blood-producing tissue (5).
In case of AZT toxicity, she suggests lowering the dose, or giving additional drugs to try to replace the missing neutrophils (protective white blood cells) and red bloods cells destroyed by the drug.
Listen to Viral Load, T-Cell and AZT
LS: Now some of the drugs given are the…what are the AZT type of drug, and some are the protease type of drug. Now I know from, you know, knowing lots of guys, adult gay men, who, um, that these are, you know, really fraught with risks, and they do have loads of really detrimental including fatal side effects.
Dr. Painter: ...uuuuhhhmm…
LS: Well, I, this is just kind of clinically known, I mean…
Dr. Painter: Do I agree with that strong of a statement? I think you’ve probably overstated the case. I think, um, treatment criteria are continuing to evolve and we now understand, um, more and more, um, completely in adults and we’re, we’re um, evolving, um, with our understand in children of what level of virus and what uh, number of CD4 T-cells, um, merit treatment, and, um…
It’s for the current recommendations, um, and they vary betweenm um, particular, um, uh, groups that have made the recommendations, such as the, uhm, International Aids Society USA, uh, recommendations panel, or the Department of Health and Human Services or some internationally similar groups, for instance in Britain…
With some minor variations of a general criteria, for instance right now in adults is that if an adult, who is asymptomatic, okay, from their HIV infection, doing well clinically, um with a virus load that is at or below 55 thousand, and, uh, T-cells that are, uhm, at or above 200 to 350, and that’s where there is a little bit of difference in some of the recommendations, whether you choose the 200 or the 350 number, um…
For adults with lower viral load, and lower CD4 number, they um, may, not need…to initiate…treatment, um, and have continued monitoring of their health, their viral load and their CD4 number.
Because with um, advances in um, our understanding of HIV and treatment, um, it’s clear that a person’s risk of serious opportunistic um, disease, um, is, and their risk of progression to Aids-defining illness is determined by their viral load and their cd4 number, and uh, those seem to be the numbers at which we can balance the uh, need for treatment with, uh, avoiding, if treatment is not needed, uh, one, um, being on a medicine chronically, and two, the potential side-effects from medications.
Yes, any medicine has side-effects,
LS: Right, well, but…
Dr. Painter: In any clinical endeavor, the aim is to, um, determine the balance between the illness, um, and the very real risk, of the illness, if it progresses, and certainly Aids – HIV and Aids, untreated, is a terminal diagnosis. That needs to be remembered.
LS: Well, well…
Dr. Painter: And so, the, the side effects of the medicines, um, are increasingly, um, well-understood, and can be monitored and can be, um, either treated with changes in the medicine, addition of other medicines…
For instance, the bone marrow suppression that is sometimes seen, resulting in anemia or low white counts for patients on um, AZT, and that’s the older name, the new initials are ZDV for Zidovudine, uhm, one, can be monitored, by, um, CPV [circulating blood plasm] counts (6), every, oh few months, and if necessary, can sometimes the Zidovudine, can be continued, or perhaps at a reduced dose, or perhaps with, um, support of the bone marrow by a drug called G-CSF (7), which helps increase the nutriphil component of the white count, or in the case of anemia, um, Epogen (8, 9), which helps increase the red count.
[end of transcript]
Read more about the ICC investigation Here