Wide range of views about switching to weekly, monthly or biannual ART

[Jim Allen]

In short they asked 263 people how interested they would be in switching (I suppose to currently developing) less frequently treatment options and found that not everyone likes every idea equally.

No surprise here.

I mean we all live different lives, with different needs and/or barriers to certain treatments, we all have our own views on treatment management and different levels of access to clinics etc etc . So a divided preference result in a survey would be totally expected, if you ask me.

Jim

Wide range of views about switching to weekly, monthly or biannual ART
http://www.aidsmap.com/Wide-range-of-views-about-switching-to-weekly-monthly-or-biannual-ART/page/3349417/

Participants were presented with the following statement:

“Several new HIV medicines are being developed that could be taken less frequently than currently available options. Compared with your current HIV medicines, how interested would you be in switching to new treatment that…is a single pill once a week, two shots in the clinic every other month, or implanting and removing two plastic rods about the size of matchsticks in each forearm every six months?” Patients were asked to rank their preference on a scale of 1 (not at all interested) to 5 (very interested).

As regards new therapies, one pill once a week emerged as the clear favourite: 66% said they would be very interested in this option, 20% said they would be somewhat interested and 14% were not at all interested.

Opinions were mixed about injectable therapy: 39% said they were very interested, 23% somewhat interested and 38% not at all interested.

Only 18% of patients said they were very interested in implants, 23% were somewhat interested, and a clear majority – 58% - said they were not at all interested in this option.

Derrick CB et al. Who wants to switch? Gauging patient interest in novel antiretroviral therapies. Open Forum Infectious Diseases, ofy247, https://doi.org/10.1093/ofid/ofy247, 2018

[Jim Allen]

One pill, once a week would be my preference as well.

[lay198719]

two shots in the clinic every other month.
not the implants thing though..... just a personal preference

[Loa111]

I think I'd prefer a weekly pill. At least you are in control of it, and saves wasting a day going to the client.

Though 2 shots at clinic every 2nd month would be a decent option too.

Wonder how long it could be before or if the weekly pill option becomes viable? e.g. 3 years, less than 5 years, less than 7-10 years, or over 10 years?

[Mightysure]

I'm in the trial for the monthly shot. I was hoping I'd get in the 2 month cohort, but alas, it wasn't in the cards for me. It takes some getting used to because the muscles are used that amount of invasion and the cabotegravir side gave me hell for a week after the first injection, which is more medication than the maintenance injections.

I'd prefer the implant though.  I dont want to go back to daily pills, dealing with pharmacies, having to use a mail order specialty pharmacy per insurance company rules, and coming home to life saving medication on my door step.

And sometimes I would forget to take my pill or forget if I took it because life often times gets hectic. And worrying about your luggage being searched at the airport or luggage being lost or the various other traveling mishaps.

I get a shot every month and I have my daily dose regardless of what I'm doing, what time of day or what or if I've eaten.

It's also much less medication. You get two injections, 300 mg of Rilpivirine and 200 mg of Cabotegravir. Oral pills are 25 mg and 30 mg daily.


But the implant sounds more convenient and less getting used to.

[geobee]

I want to echo something Mightysure said -- I get the Meds in the mail, and I live in a home with a lot of people passing by on the sidewalk.  Sometimes the meds don't all fit in the mailbox so they're kind of hanging out the top for all to see.  I get an voice mail from my pharmacy before shipping so I know they're coming.  Still, it's a little odd to have a bag full of about $9,000 worth of meds sticking out of my mailbox. 

[CaveyUK]

Personally I'd go for the once-a-week pill. It would need to have that kind of regular frequency to it at minimum or there would be a tendency to forget. As for once-a-month injectibles....I'd be kinda worried that something would stop me going for it (illness etc) and then I'd be on edge all the time. At least a pill is fully in my control.

I'm sure that if my circumstances were different and meds were harder to get hold of, then I'd have a different view though

[MarkintheDark]

Like @Mightysure, I'm in the shots trial and only drew the monthlies.  I've been perfectly happy, one might say relieved, not having to stick to a daily regimen.  The trick on the pair of shots is to take them lying down (literally), so the glutes aren't engaged.

One bonus is that I'm dealing with an NP I've had for eight years who knows my history.  As an LTS my health isn't robust and the appointments are an opportunity to also address any other health issues I may have.

@CaveyUK mentioned the possibility of missing an appointment due to illness.  In fact I just had such an event and was "late" for my injections.  Much the same as one might do with an oral medication, it was administered as soon as reasonably possible  before I resumed my regular schedule.  It's speculation on my part - I'm not a medical professional - but it seems to me they might also even be administered while one was in the hospital, just the same way one continues to receive their regular oral medications.

fwiw, no way on the implants.  I get weird just having a port in my arm (or neck), let alone an alien tracking device. 

[Mightysure]

@CaveyUK Are you not as concerned that illness could keep you from going to the pharmacy? Or keep you from being able to ingest and properly absorb the meds?  I mean there are tons of "what ifs", but these meds are designed with long half lives and being late one day will not cause viral rebound.

They have oral tablets in case something happens to where you can't make your appointment and there's a 7 day window, for study purposes anyway.

I'm noticing alot of objections to the injections aren't well founded in reality and often based in fear of something  new.

@geobee that has always bothered me. Like, my health shouldn't hinge on FedEx or the USPS making on time deliveries and passers by not being theives.

[Jim Allen]

I think we all live different lives, with different needs and/or barriers to certain treatments and so the realities are different for people and this factors into each persons choice. 

My simple example: With only a very limited number of Hospital pharmacies and HIV meds being collection only combined with me finding traveling & visiting them once per 6 month a major pain in the hole already, so much so that I'm already stretching this to 8 month gaps at times. I would find the prospect of having to visit more frequent bi-monthly for an injections not an improvement to my situation and far from appliling

Although I have more barriers to injections, I admit if the injection became once per 6 months or once a year I might reconsider, even more so if in combination it would be self-administrating, now that would be cool.

[Mightysure]

I get that people have unique circumstances and preferences, I dont have an issue with that. What irks me is when people make assessments of things based on faulty assumptions or misinformation.

Just like the denialists or people who are uninformed say that modern ARVs are toxic or they cause AIDS and its why they should be avoided.

What I like about today's HIV treatment is that there are many options to choose from.  Whatever works for you, works for you.

But I would hate for someone to be discouraged from choosing an option that would be perfect for them because there is misinformation being spread about it.

[Jim Allen]

Unique I don't agree with at all.

I don't think anyone has spread misinformation in the thread, one size does not fit all and I think everyone has been pretty clear that some options do not fit their circumstances and they have their own concerns.

Anyhow i think you are being bit unfair by comparing someones seemingly genuine concerns and a treatment preference, who I am sure is weighing up their circumstances, living area, access to med, clinic facilities and travel etc etc ect to denialists of HIV.

Personally next to the concerns I already listed I also share CaveyUK concern about being sick as when I am sick i'm in bed and unable to travel and rescheduling appointments can take weeks & I don't see this changing anytime soon unless miracle happens in our healthcare system. in the meantime my cupboard on the other-hand is within reach with plenty of pills and once a week would be a fanatic option. 52 pills a year or the pain in the hole of visiting Dublin 6 times a year for a shot ... No brainier - Pills would be the choice for me every time.

What I like about today's HIV treatment is that there are many options to choose from.  Whatever works for you, works for you.

That we all seem to agree on

Look perfect if shots work for you, knock yourself out. Nobody is discouraging you or others from trying it, the point of the thread was different things work for different people, and its great that we might have a choice 

[Loa111]

52 pills a year

I wonder if or when this can become a possibility for us? Ok it's a "how long is a piece of string" question I am asking, but forgive me, as all this is new to me reading about clinical trials or new research on here, or how the process might work before this type of treatment is licensed and available.
Are we talking say 3-5 years, or  5-7 years, or 7-10 years or >10 years?

Am I being too hopeful in asking Santa for it this Christmas? 

[Jim Allen]

>10 years

A lot has to happen for medication to go from initial development to trials before finally if it works reaching the market. Some things go all the way to Phase 3 and don't pan out.

With any development until its in your own hand, don't get excited.

Jim

New Drug-Capsule Technology Could Permit Weekly Dosing of HIV
https://forums.poz.com/index.php?topic=68604.msg

MK-8591 has considerable potential to become the first HIV drug that could be taken as an oral pill weekly, either as treatment or PrEP.
https://forums.poz.com/index.php?topic=69260.msg

[Loa111]

Thanks Jim. It's great that researchers are discovering new potentials. Sometimes I suppose it's good to mentally take it with a grain of salt until the actual treatment is in your hand, at least to manage expectations.

Lol...I've totally convinced myself that there never will be a full cure in my lifetime, otherwise I'd go mad with frustration & false hopes!

[Mightysure]

"One size doesn't fit all" does not change facts.  Misinformation has been put out in this thread. I don't think there is any malice, but things said about these extended treatment options are just not true. I don't understand why it's an issue pointing that out.

[CaveyUK]

I get that people have unique circumstances and preferences, I dont have an issue with that. What irks me is when people make assessments of things based on faulty assumptions or misinformation.

If this is referring to me, I'd like to know what faulty assumptions or misinformation I have used.

Just like the denialists or people who are uninformed say that modern ARVs are toxic or they cause AIDS and its why they should be avoided.

I REALLY hope you are not referring to me now, otherwise we will fall out big time!

What I like about today's HIV treatment is that there are many options to choose from.  Whatever works for you, works for you.

Yup

But I would hate for someone to be discouraged from choosing an option that would be perfect for them because there is misinformation being spread about it.

Again, you are using a word which is obviously incorrect as there is nothing of the sort in this thread.

At the moment you are on a trial. There is no treatment to be discouraged from, as the option you are trialling is not on the market, and even if it does become so (which is likely), there are many regions of the world where it may not be immediately available. So for avoidance of doubt, we are talking about hypotheticals here, for most of us.

As you point out above, a weekly or monthly shot will suit some people and not others. There are a lot of factors that come into play when talking about preferences.

Personally I have a rhythm, a cadence, to my daily pills which I am reassured by. I'd probably be fine with weekly (although only if I could inject myself as getting to a clinic at that frequency would be out). Moving to a monthly shot would increase the risk of me forgetting, as there are some things in life which I am hopelessly bad at and this would be one of them (the arrival of direct debit years ago was a godsend, as I would frequently end up paying credit card or utility bills late, and I still forget to submit my electric meter readings when I should).

Now there are some people who are super regimented about such things and wouldn't have that problem. I'm not one of them. Hell, I've been working such stupid hours in recent weeks I've forgotten to go and get my ANNUAL flu shot, and I only have to remember that - with plenty of reminders on here - once a year!

Add into that mix the UK NHS habit of cocking things up administratively and forgetting to book appointments or send out reminders without chasing, and it would make me a little nervous.

The illness thing was just a compounding observation. It doesn't happen often, but if I'm laid up for 1week+ withl a virus, or, as I had a number of years ago, spent time in hospital for an ankle operation after breaking it, then I'd be a bit panicky if it's the time for the monthly shot. That's just me.  Of course, if there is a ridiculously long half-life then thats helpful, but as I say, the treatment is still in trial and so we don't know what the eventual guidelines will be.

So I could cope theoretically with weekly shots, if administered myself, or six-monthly or annual shots if co-inciding with clinic visits, but I would not be a fan of monthly or 3-monthly shots. Your mileage may vary.

And for the record, I don't get my pills from a pharmacy. They are given to me by my doctor at my clinic visits, and I always have a surplus at the time of each appointment. Again, everyone's situation is different.

Sorry to be so verbose, I just wanted to explain myself because the ridiculous assertion that I am somehow encouraging people not to consider a future treatment option by spreading misinformation.

[Jim Allen]

"One size doesn't fit all" does not change facts.  Misinformation has been put out in this thread. I don't think there is any malice, but things said about these extended treatment options are just not true. I don't understand why it's an issue pointing that out.

So far you have not been pointing anything out, If you feel misinformation has been given feel free to point it out and educate someone or ask why. 

Sticking your fingers in your ears and ignoring someones concern/situation or differences in healthcare systems they have today and making statements that its misinformation however does not make it so, and is not correcting anything. Neither is it helpful comparing people who have voiced a different preference currently in treatment than you, to AIDS denialists either.

Again look its perfect if shots work for you, knock yourself out.

Nobody is discouraging you or others from trying it. I think its great development to have and the point of the thread was that different things currently would work or be preferred by different people.

Jim