Haller Lake General Meeting 2017-04-06

Rob called the meeting to order at 7:30.

Marita: Next meeting (May 4) will have Kelly Newton, of Heart Perception Project.

Egg hunt is April 15, 10:00 a.m. Details on the web site and NextDoor. Also that day, Kelly Newton will have a workshop at The Bridge from 2:00 to 5:30, and games night is that evening.

Q: Will there be the craft fair?
A: That’s now around Christmas.

Carolyn Crockett announced for March for Science, April 22, Earth Day. One of 480 around the world. It starts in Cal Anderson Park at 10:00.

Rob: We distributed bylaws at the last meeting. They hadn’t been revised since 1968. We presented them last meeting, but we found some tweaks, so we’ll have the vote next week.

Some of the changes: Eliminated the unnecessary line “The Bylaws will be amended to read as follows.” Now we list Managing Trustees as Officers explicitly (was ambiguous before). Managing Trustees used to be 3-year term; now it’s one year like other officers. Now it’s cleaner and more consistent. Now we say only “chair”; we eliminated one hold out use of “chairman”. The date it would take effect is now June, 2017. Shawn’s lawyer brother checked over and suggested a couple of clarifications: e.g. how we say general membership must be notified in advance of a special meeting.  Also that each member present has one vote. The change in the trustee terms was substantive; other changess are cosmetic. We’ll be voting on the bylaws next month. You can find the old version on the web site under “About the HLCC”, then “Governing Documents”. Lots of inputs helped smooth the glitches.

There was some discusion of a change in the 5-way stop on 125th and Corliss. It will change around May 25th. There will be no parking near there. The stop sign will be moved to the other side of the pathway that crosses the street. The pathway will go all the way across the street at 1st and Corliss. It will change which turns can be made. Will take out the blinking stop light. The crosswalks will be lit.

Rob introduced Randy Harkness (chair of the nominating committee) who introduced their candidates for office next year:
President: Ethan Bradford
Vice President: Randy Harkness
Treasurer: Shawn McPherson
Secretary: Celia Matson
Senior Managing Trustee: Rob Liang
Second Managing Trustee: Jason Broad
Third Managing Trustee: Marita Niemann

The Advisory Trustees will be Jo Dawson, continuing, and Rob Liang, as past president.

Rob introduced Sarah Benki-Nugent. She has an MS and a PhD from the UW.
She’s an Acting Assistant Professor in the dept. of global health at the UW.
She’s been in Kenya working for a long time.
Our projector has gone missing, so she showed slides on her laptop. [Note: it turned up at Shawn’s office, which is not unreasonable, since it belongs to Shawn.]

Sarah: Her study started just as she got to know people at HLCC.
She studies brain development in HIV affected children.
She acknowledged the others on her team: Nancy, Tony, and Alice, all neurocognitive testers.
150,000 kids are born with HIV each year, the vast majority in sub-Saharan Africa.
HIV causes inflammation in the brain which damages neurons and their myelin sheaths.
We now have treatments that allow kids to live to adulthood, but they can still have had the inflammation that affects development. A large proportion of HIV infected children have impairment, even if they’ve been on HIV suppression drugs for a long time.
In 2008, WHO recommended all HIV-infected kids get treatment, but only half have access to treatment.
The main question of the study is, will early treatment lead to better long-term outcome in life?
Often the diagnosis doesn’t come until they’re sick, when there might already be irreversible damage.
In a picture of the team we see Irene, the study doctor, who will be coming to the UW to get a PhD next year. Also, there are several councilors, who started as study participants.
There are 270 children being followed-up. Some were HIV infected from their mothers at birth; some were born to mothers with HIV, but aren’t themselves infected; some have mothers without HIV.
Q: What percentage of HIV-infected mothers transmit the virus to the baby?
A: Without HIV medicine, 20-30%. With medicine, as low as 1.5%.
Q: Among the women who are HIV positive, how effective is the HIV medicine for them?
A: Very effective. The HIV field has evolved dramatically in recommendation of when to start treatment. Used to be you had to be sick; now you can get it as soon as you show antibodies.
Q: Who pays for the medicine?
A: The U.S. pays for it in the President’s Emergency Plan for AIDS Relief (PEPFAR), which was started by George W. Bush. It’s done great good. It saves many lives directly from AIDS, and also led to improved healthcare infrastructure.
Q: Is the treatment pills, shots?
A: Pills for adults; syrup for children. HIV medicine doesn’t make money for anybody in Africa, so it was hard to get a pediatric formulation. Some of the medicines are very, very unpalatable.
Q: What’s the dose frequency?
A: Daily. For children, a couple of times per day. The holy grail is injectables. Stopping treatment can lead to resistance, and thus fewer options for care.
Q: Can medicine pass through breast milk to babies?
A: Yes.
Most of the kids in the study are poor, living in informal settlements. Some of the kids have been getting medicine since birth; others started as toddlers, after they were very sick.
The study used cognitive tests developed in the US. They’re complicated to present and score. It takes 4-6 hours to do one assessment. Assistants presented the tests.
Q: In a foreign language?
A: The assistants are from Nairobi. There are 46 distinct tribes in Kenya, but most people speak English or Kiswahili.
Examples of tests: visual-spatial reasoning (navigate dog to bone), short-term memory (like Simon with hand movements), learning new nonsense words for pictures, motor (string beads, hopping, itsy bitsy spider, push ups, tennis ball). Tested uninfected students as a control; they also largely live in the informal settlements.
Children who got treatment from birth had deficits, but they were mild, and less pronounced than the late-treated children. Deficits are in many domains for late-treated; for early treated, they’re only in memory and processing speed. In the future, we could use that deficit knowledge to help guide counceling of children with AIDS.
Q: The drugs can also hurt, yes?
A: Yes, they can. Drugs that can get into the brain to treat are likely to be neurotoxic.
Q: Do you study children who aren’t in the informal settlements?
A: Not yet.
Q: That would be important to find the discrepancy between privileged and deprived.
A: That’s how disadvantaged the study group is that they’re barely better than HIV infected.
The study added a Malawi-developed tool (for children under 5) which may be more locally appropriate. It tests developmental milestones and has been give to 1500 kids in Malawi. With that test, the HIV-infected kids have lower scores compared to the Malawi norm, but 40% of the children in Malawi are undernourished. Sarah is writing a grant now to go into schools and assess children.
Q: Is there any research on cognitive defects in adults who get the drugs?
A: Those are called HAND: HIV-Associated Neurocognitive Disorder. The HAND criteria isn’t used for children, but it is a good standard for adults. HAND relies on self-assessment of daily functioning, so it’s hard to extend to children. Sarah’s group will look at the WHO disability assessment scale, which is adapted for children; it tests how well children participate in school.
Q: Are there families where some siblings have it and others don’t?
A: Yes.
Q: What’s the infection rate of women in Kenya.
A: 8% in Nairobi. Higher in other districts. In some parts of western Kenya, around 20% in general, and 30-35% in pregnant women.
Q: Is it because we’re not paying for drugs?
A: Don’t know. Maybe access to health care. Maybe migrant populations.
Julia: Migration (fisher communities on Lake Victoria). Also less male circumcision.
Q: Are Kenya’s numbers like the rest of Sub-Saharan Africa?
A: It’s in the middle. South Africa and Botswana are very high.
Q: What’s the prevalence of HIV in the US?
A: Don’t know. Guess < 1%.
Q: Are there happy outcomes?
A: HIV infected children survive. And they’re not orphaned. Sarah’s colleague, pediatrician Dalton Wamalwa, says that the day an HIV infected child becomes a pediatrician, he’ll know he’s succeeded. Through this work, they found an immune marker that was linked to how well kids did at school age. There are anti-virals that change the levels of this marker, so she’s writing a grant to add a formulation of that drug to see if it helps baby’s long-term outcomes.
Q: Are there hundreds of people working on this in Sub-Saharan Africa?
A: Yes.
Q: How many have HIV?
A: ~37 million in total, 90% in Africa. 1.8 million children, most in Africa.
Q: Prevalence in children in Kenya?
A: About 1%
Q: Is a great percentage of Sub-Saharan Africa women getting treatment?
A: About half of children; don’t know on women.
Q: And the men?
A: Sarah earlier worked on PEPFAR checking; then, men didn’t follow up well. We need more emphasis and intervention in middle childhood.
Q: If a person is under treatment, is the viral load less?
A: Yes, it lowers it to the point where transmission is much less likely. That’s why it’s important to treat everybody.
Q: Do the children who start treatment as infants need to continue for life?
A: Yes. Part of what Sarah’s mentor, Grace John Stewart, has worked on is trying to find a way to avoid that. “The Mississippi Baby” got anti-retrovirals from birth, and then nobody could find the virus in her body, but now it is detectable. So far, no cure has been successful.
Q: Nor has the search for a vaccine.
Q: Is it dangerous to work with HIV patients? How do you protect yourself?
A: You can’t get HIV through touching or kissing. Only through sex or a needle stick. Healthcare workers do have some level of risk. Sarah knows someone who was stuck with a contaminated needle. HIV medicine can be taken quickly after that, to make getting the disease less likely, but for the friend, they were so unpalatable, she stopped.
Q: Then why would injections be better?
A: The formulation would have particles which last in the body, so it could be done once per month.
Q: Then there are needles.
A: There’s a way to deal with that.
Q: What does the education system do to overcome the deficits the kids have?
A: That’s tricky. The quality of schools is variable, so measuring school achievement is not a good test. Another problem is a lot of HIV stigma; kids might be ostracized by the community. Many kids aren’t told about their status; when they’re told, they’re told to keep it secret. So schools won’t know.
Q: Can you move kids to a better school to see if they improve?
A: That would be a wonderful thing to do, but hard to get funding. Hard to figure out what’s a good or a poor school.
Q: Compare the scores from kids from the different schools.
A: The real question is what do you do. There are cognitive therapies that promote brain activity, memory, and attention. Not sure whether they work or can work. Gains are small at best. The field is evolving and new tools are worth a check.
Q: Is your funding from NIH (National Institutes of Health) and are you worried?
A: Yes, and yes. Trump’s proposed budget cuts it way back.
Q: Can you get Gates Foundation money?
A: A number in Sarah’s dept. do get Gates money; she doesn’t.
Q: How is your funding?
A: She Doesn’t have new grants lined up, but has lots of new ideas. There are also lots of important results to get out and interesting proposals to write.
Q: Science is a lot of work and a long process.

It’s nice to have an audience with lots of questions.

Respectfully submitted by Ethan Bradford, HLCC secretary.

p.s. Thanks to Sarah for reviewing my notes and correcting some errors and misspellings! Because her research she presented isn’t yet published, we can’t include her PowerPoint slides here.