National Doctors’ Day, 2021, Health Care, March 30 vering research progress to patients: The community perspective | Jules Levin, MS

That goes right to hiv care and services from the federal government and who decides how that money is spent well, it seems to me, like federal officials, are making those decisions without adequate input from the patient community. So um, no question i’d love to find a cure cure is important. No question perhaps important. It plays an important role. Prep doesn’t help patients. Are we going to find an eradication? Well already, many, if not most, of the cure. Researchers have decided and ex and said themselves that they don’t think we’re going to find an eradication. Fauci himself said that in paris i don’t think we’re gon na we’re, not gon na find an eradication. So now they’ve turned to functional cure. The whole field of cure research has always been. I think, completely disorganized. Well, not well. Organized well not well thought out not well implemented the un it’s unethical to implement, in my opinion, the interruption strategies that they’re doing like candy and all these studies. There are no guidelines on using interruptions. Patients don’t understand the interruptions. The researchers themselves don’t understand the the risks of interruptions. I mean i’m around a long time since 1994, working on expanded access within geneva and retinovir with the fda, with with the some federal officials and um and – and i just have to tell you that, um that um, the way things are going right now. I think we’ve gone very much downhill, it’s become much more political than ever before, most used to be more, it used to be more patient, oriented used to be oriented towards the needs of the patients.

Now it’s, very political. You know in the earlier days, in the 90s, the advocates or activists were mostly hiv infected and they may not have known all the science because that’s what i’ve devoted myself to to understanding the science as best as i can, but they were patients and they understood What it was like and what their needs were living with hiv today, most of the advocates, as i see it, are mercenaries they’re careerists there are some with hiv they’re, not 60.. I can tell you that most of the advocates or act most of the advocates are activists. I wouldn’t even call them activists today, frankly, um mercenaries, they don’t they’re, not over 60 with hiv. How do they understand aging, they don’t. In fact, um – and you know when i was 52 um – i thought i was you know – coasting okay, now, i’m 67. Now what i know what it’s like to be aging with hiv – and i could tell you that most people just don’t, understand it’s like a lot of things in life. You know you don’t know what it’s like unless you have it’s like you know, if you want to get money from congress on hepatitis c, you find a senator who has a family member with hepatitis c that’s how it works. So just a little bit of history, you know um, so i started natap in 1996 and my early work was, you know: expanded access with rotanovir and dinavir and and um and uh it started.

I guess when um i slipped and fell by a pool in mexico. Embarrassed to say – and i fractured my my wrist that was about – i was about 52 and and and um and that’s. When i went to my doctor and i had never been tested for us, i had never done a dexa, never never and um. So um, which was my doctor’s fault, and i take some responsibility for that. I should have known better. I think he should have known better anyway. That was 15 years ago and of course i did a dexa i found i had osteoporosis. I had surgery i had pins put in and then i started in my wrist and i was lucky. I had a great surgeon at um here in new york uh a wrist expert and i started looking around. As you know, i’ve been covering conferences since 1996. I started looking and i pour over all the data at all the conferences, particularly croi, and i started looking around what’s going on in the in this world of bone and and other related things. But my first interest was in bone and um, and i started to see presentations at conferences here and there on these things i mean i don’t think they were calling them co, morbidities or bone or heart disease or something, but no one was putting this all together And i put it all together and i think i was the first one to realize and recognize this problem with aging and the first thing i did was it took me several months to set up well.

The first thing i did was started through my email service. Educating the field and the community about aging and bone and comorbidities, and i really it wasn’t getting any traction. I don’t think not much. It took me five years to convince the advocacy community that this was a problem um and after several months i went. I formed an ac, i used to be in the actg on the old hiv rack committee. I don’t know how many people remember the old hiv rack committee with uh um. You know chip, schooley and john miller’s. You know judy courier wasn’t, even you know there yet um. She was on the women’s health committee, and i mean it was a lot of fighting with them back then um between me and them, and you know uh so uh. So i went to the actg and i said i want to have a a bone educational day symposium, so i planned with the acg actg. It took a bunch of planning and um and we had a one day full day event on bone and hiv, and i had some and i set the agenda. I had pablo tabas come in and speak and an outside bone expert speaker was also working in the actg and several people, a couple of people and um and at the end of that meeting we formed the actg bone committee, which is still existing it’s. Not doing a lot now as much as it was then, but it’s still existing and i’ve been a member of it ever since, and then, as i was still trying to move this along through the stakeholders in this field.

Eventually, i think it took several years and eventually i found my way to convince the advocates and also to uh and and i had had a relationship with bob eisinger in the oer and uh and a little bit with jack white’s carver, the former director, but more With bob – and i had approached them about this issue – and i said we really need to have to move this – to do something about this and, to my surprise, uh jack and i had put together a list of requests or demands. However, you want to put it that i submitted to jack into the office and in advance, and i gathered together some of the advocates five or six of us. We went down to the uh nih in in bethesda and met with with in their office and when we walked in the door jack you know gave us everything on that list. Everything there wasn’t even a word of discussion that whatever you want, you got it then i said we need a one year panel of experts that i wanted that i wanted to be on to discuss what are the research initiatives and that’s part of what we need Today, i will say to maureen: we need a panel of experts, you know um, not a long term, something very short term to talk about what are the needs. We also need i’m calling for a national discussion on aging. So you know um.

We need a national discussion on aging that includes all the stakeholders, and you know back in last fall. There was a two or three day meeting niaid meeting on cure research and the day after that, and i watched the webcast – i didn’t go the day after that. The oer had a roundtable discussion with their committee, their advisory committee, about a cure and to discuss the presentations at the conference and to have some back and forth, and there was a commission several community people on it and steve deeks was on it. There were you know, 10 or 20 cure related researchers on it. I don’t recall it. There were no objections brought to interruptions, but how come and then i raised the issue. I saw one of the presentations from someone from i think the nih or the oar and and i emailed her – and i said what about the ethics of interruptions it wasn’t discussed. I had a conference call with her. She said: let’s have a conference call. She defended interruptions everything i listed about the ethical concerns about interruptions. She defended the interruptions and then i had a call from a big actg research researcher won’t tell you who, in front of everybody you all know who he is, who said i’m calling you, because the actg is concerned about your emails, raising concerns about the ethics of Interruptions they’re concerned that their funding would be will be lost and he explained to me why it wasn’t a concern, and then i explained to him all my objections and at the end of the conversation he said, you’re right inform there is no informed consent.

I know what informed consent is. I was in the actg, it doesn’t work, it does there’s no informed consent too many patients have no idea what they’re getting into it’s like interruptions, which i knew would never work in the mid 90s. I warned advocates about it and they all did it and it harmed a lot of patients it’s the same thing with interruptions now sure they’re, more structured, they’re more watching more closely. What about cns escape in the brain from an interruption? And were you even talking about that? No, not really so um. I would suggest that we need a panel and you know um. We need a panel of some research, aging researchers and so called experts in the field, many of whom are at the in the room. Today, to meet with the oer to talk about what we need to do in research and and we need to bring the key stakeholders here, because this is a health care system problem it’s, not just the patients and the clinicians it’s, the health care system i’m. In new york – and i am familiar more familiar with the new york community than any other city – and i tell you that what’s going on in new york city is horrendous and you know there are some new york clinicians here feel free to express your opinion. If you want about this, but my experiences are in the healthcare systems in new york in the private care and the public care system, 10 minutes in and out 15 minutes in and out there’s no way that a person with hiv with higher needs, particularly a person.

Who’S aging, with hiv, with five comorbidities on 10 12, 15 medications suffering with cognitive impairment, suffering with osteoporosis, isolation, there’s, no way that you can deal with their issues in 10 or 15 minutes, and the best you can do is you know very little. I think and then referring them to specialists around the city, whether they’re in the same center or not. Navigating the health care system for aging patients with cognitive impairments is very difficult. When you get a referral slip, go see this kidney guy at mount sinai go to this cardiologist over there and then we’ll talk about it. First of all, the doctor really doesn’t even speak to the kidney guy. He sends you there, but they don’t speak. How do you conduct care that way for an aging patient? I mean i can go on and on about that, but i think the message is clear and – and you know – and you heard from both speakers and from others here today, but i want to repeat it because it comes from someone who experiences myself experiences these things. Now, isolation, you may not think that jules levin experiences isolation, but i isolation and was talked about stress and anxiety. I think everybody with hiv has ptsd. Some may not realize it some deal with it better. Some don’t deal with it as well. Hiv is extremely traumatic, as was said by one of the speakers here today everybody has ptsd what about the legacy of lipid dystrophy, so i mean i could spend you know a lot of time.

Talking about that, let me just say that i feel that a very much disservice was done to the patient community by the 10 years and millions of dollars we spent on lipid dystrophy research. We found no understanding of what caused it. We found no solutions, no treatments except surgery, and i think that was a tremendous disservice. We owe more to the patients and let me just say that so at 67, being a member of the um first generation to survive with hiv and they’re, you know it’s a significant significant population by the way 80 percent of people in the united states are over 40 45.: this is a trend. This is not just a small group of people. This is going to get worse. 50 percent are over 50. soon by 2020, it’s estimated 50 percent are going to be over 60 and 25 percent already are over 60.. So and of course, there’s the issue that some people love to talk about that. Well, you know we don’t know, and it came up here. We don’t know if you start heart early at 500 or 800. We don’t know if you’re going to have the same problem with inflammation and comorbidities, and my answer to them is not it’s going to happen. It may not be quite as bad as it is right now it’s going to happen, because hiv itself causes inflammation. Unless, if you start heart the day you get hiv, then maybe you can prevent the inflammation and the immune activation and it’s still just a maybe because we saw data on that and there was other studies conflicting with that.

That was just one study you heard, but there have been other studies of kroy showing that if you start in the early days that it doesn’t reduce, eliminate all the inflammation most people say you start at 500, 800 you’re still going to have inflammation you’re still going To have immune activation you’re going to still can have viral replication it’s still going to be in your brain it’s still going to be all over your body. Are we going to find a cure? Personally, i don’t think so. A a functional cure. I just don’t think so. Is it possible yes, it’s possible? Should we be spending money and devoting resources to this? Yes, aging and hiv should be on equal footing, with all the attention and funding for cure and for prep and it’s, not it’s like this that’s. The difference and that’s why we’re here talking about it today and thankfully that’s? Why maureen good now is here today and um? We need two things: we need better research. We need stop the duplication of research studies, there’s a lot of duplication going on. We need patient centric research, for example. What happens to somebody who’s 65, who gets a fracture? Is there recovery different than a person without hiv or with hiv at 40? Who gets a fracture, and i can tell you the answer because i’ve had two fractures, so i know that i know what’s going to happen. The the muscle response, the fat response, the cognitive impairment response, the frailty response, it’s all different, but we don’t have that kind of study going on that’s.

Just one example of a study that we could talk about those kinds of studies in a panel advisory group with the oer to talk about those kinds of studies. The other thing we need is, and, and you know i’m – not convinced and and of course you know – i got an email from the ac – i sent out a big email to them, um complaining to them the other day, uh sending them the new carl goodkin study. Um that says, aging um. Does he the aging that uh uh aging cognitive impairment gets worse in hiv that it’s accelerated? That was the crux of carl goodkin’s study and it was a it was a mac study and so and i and i sent them a note saying so. What are you guys going to do about this, and i got a long note back from them and um and so um? So we need so we need. We need better research, but we also need services. I have two minutes left so i’m, just going to say the other part of this. So my point is and and part of their answer was you know, we’re looking into anti inflammatories, we may find anti inflammatory that work. We may not. I suspect that it’s going to be a real challenge to find anti inflammatories that are tolerable and effective and safe monoclonal antibodies. You know safety tolerability questionable, so the last point i want to make is what we really need today is services.

We need a full funding of support services for patients. We saw we heard two models here today: i’m, not sure what the answers are, which is why we need a national discussion on aging, with all the stakeholders sitting around the table, including hersa, including ryan white, including the nih and nyad, and the actg and aging researchers And some, and and and community groups, and advocates, and patients and important groups to talk to to go back and forth to find out a solution. But we need services for older patients and it’s, not just for the patients it’s for the clinicians and the clinics. We really need a full, complete, comprehensive set of services for these patients and we may not have all the answers and know how to do this, as eugenia said – and i think meredith said too, but we need to start now. We can’t wait three to five years to begin to do this. We need to do this now and we’ll learn by our mistakes, because if we wait three to five years, there’s going to be a lot of people who are dead and one last point, we haven’t even talked about the problem of. What are you going to do? Because giovanni has reported data on this last year and others have too, what are we going to do when we have 30 percent of people who need to be in long term care, because they can no longer take care of themselves at home? We haven’t even talked about how we’re going to handle it isn’t it time that we talk about that.

What do you think?

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