PrEP vs. Privacy
April 30, 2019 11:41 AM Subscribe
When you’re a young adult on your parents’ insurance, your health decisions are a family affair. And that’s a problem for HIV prevention. Although Salvador is 23 years old and lives halfway across the country, his parents back home in the Carolinas always know when he visits his doctor. He doesn’t even need to tell them: Their health insurance provider, which also covers his health care, does that for him. After each medical appointment, an explanation of benefits arrives at his parents’ place detailing every billable procedure, test, and prescription he received during the visit. So, whether Salvador likes it or not, his parents always have a sense of the state of his health.
But Salvador is gay, and his parents don't know it. What happens when Salvador wants to go on PrEP to protect himself, knowing if he does, his parents will be the first to know?
As long as this is the case, going on PrEP is out of the question not just for Salvador, but for thousands of Americans on their parents’ health insurance who are forced to choose between their personal privacy and control of their sexual health. Pioneering research published in the American Journal of Emergency Medicine last year found that while being on parental insurance doesn’t dissuade young adults from taking PrEP, associated concerns around confidentiality—like disclosing prescriptions to their parents—do. According to the study, respondents aged 18 and 26 on parental insurance were 70 percent less likely to take up PrEP if their parents could learn of their prescription.
As long as this is the case, going on PrEP is out of the question not just for Salvador, but for thousands of Americans on their parents’ health insurance who are forced to choose between their personal privacy and control of their sexual health. Pioneering research published in the American Journal of Emergency Medicine last year found that while being on parental insurance doesn’t dissuade young adults from taking PrEP, associated concerns around confidentiality—like disclosing prescriptions to their parents—do. According to the study, respondents aged 18 and 26 on parental insurance were 70 percent less likely to take up PrEP if their parents could learn of their prescription.
If a generic version of Truvada were available for US citizens, this would be much less of a problem. The real issue is the more than $1500 a month price of the medication.
posted by demiurge at 12:09 PM on April 30, 2019 [11 favorites]
posted by demiurge at 12:09 PM on April 30, 2019 [11 favorites]
This is an issue, especially because there are times when it’s not a good idea to obscure health information. My carrier allegedly has options to avoid this type of situation if you contact them directly about it. It’s not clear if Salavador has gone that route, and he said he’s too intimidated to go to Planned Parenthood alone, so it seems he needs an advocate of some sort.
posted by girlmightlive at 12:13 PM on April 30, 2019 [3 favorites]
posted by girlmightlive at 12:13 PM on April 30, 2019 [3 favorites]
I'm well aware of a few cases in which young adults have experienced health crises as a result of avoiding care, because their parents would find out via insurance.
Young adults are covered by their parents only as a crutch to the ACA, because otherwise they a) wouldn't seek insurance, being the healthiest demographic and b) wouldn't be able to afford it even then.
In turn, parental health insurance is most frequently tied to employers, because tax laws after WW2 ...
Can we stop this stupid chain of damaging unintended consequences already?
posted by Dashy at 12:26 PM on April 30, 2019 [10 favorites]
Young adults are covered by their parents only as a crutch to the ACA, because otherwise they a) wouldn't seek insurance, being the healthiest demographic and b) wouldn't be able to afford it even then.
In turn, parental health insurance is most frequently tied to employers, because tax laws after WW2 ...
Can we stop this stupid chain of damaging unintended consequences already?
posted by Dashy at 12:26 PM on April 30, 2019 [10 favorites]
True, we get an EOB for every doctors visit, but i have never gotten one for prescriptions. That seems unusual to me. Regardless I would think you could opt out of these things. EOB's are sent so insureds know what the insurance has paid to their provider to help them keep track of what their portion of the bill might be, among other things. it is unfortunate that this process has the potential to out someone in his position.
A solution would be to have the mail come to the insured - not the policy older, but since the policy holder is ultimately responsible for the charges, i am not sure that would fly.
posted by domino at 12:27 PM on April 30, 2019 [1 favorite]
A solution would be to have the mail come to the insured - not the policy older, but since the policy holder is ultimately responsible for the charges, i am not sure that would fly.
posted by domino at 12:27 PM on April 30, 2019 [1 favorite]
My hubby has complex health challenges and I use EOBs to make sure I'm paying the right amount to the right offices and it's actually an insane amount of accounting that I'm supposed to figure out how to do on my own and none of this should even be happening, but there's also no reason an EOB needs that much detail on them at all. You went to the dr. They billed insurance for x amount. We paid them Y amount. You owe Z amount.
If anything in this hell world made any sense Metafilter would go out of business.
posted by bleep at 12:37 PM on April 30, 2019 [6 favorites]
If anything in this hell world made any sense Metafilter would go out of business.
posted by bleep at 12:37 PM on April 30, 2019 [6 favorites]
I volunteer on a crisis line and basically every week I talk to someone who is seriously mentally ill and suicidal but won't seek care because they are on the parents insurance and don't want them to know they need to see a counselor or psychiatrist at all, much less get inpatient treatment for imminent risk of suicide. This piece of the system has killed young people I'm sure.
posted by zdravo at 12:43 PM on April 30, 2019 [37 favorites]
posted by zdravo at 12:43 PM on April 30, 2019 [37 favorites]
It's out of scope for this discussion, but youts (and everyone else) have good cause to be afraid of people learning about what they talk about with their doctor. For all intents and purposes if my doc hears it and notes it down then my insurance company is going to get to know about it. And if I go to buy life insurance later you can bet I'll be signing to give them access to look at my records. I can tell you from personal experience that having sought mental health care - even if it's twenty plus years in the past and managed with generic meds! - will impact your ability to get life insurance. And probably health insurance premiums. And and and. None of which requires any sort of "data breach" beyond the basics of what gets gathered and what you have to agree to if you're going to be covered by any sort of health insurance.
posted by phearlez at 1:13 PM on April 30, 2019 [8 favorites]
posted by phearlez at 1:13 PM on April 30, 2019 [8 favorites]
If a generic version of Truvada were available for US citizens, this would be much less of a problem. The real issue is the more than $1500 a month price of the medication.
Well yeah, but seems to me that the REAL real issue is people in this country are ridiculous about socialized health care because freedom or something.
posted by biscotti at 1:42 PM on April 30, 2019 [8 favorites]
Well yeah, but seems to me that the REAL real issue is people in this country are ridiculous about socialized health care because freedom or something.
posted by biscotti at 1:42 PM on April 30, 2019 [8 favorites]
I know people right now who are delaying various types of treatment because they're still on their parents' (or spouses') insurance and they can't/won't run the risk of having their health conditions exposed to family, and there's no other way for them to pay for it. I have no doubt at all that it kills people.
It's led to at least one unintended pregnancy (and resulting cash-out-of-pocket abortion) that I know of, too.
It may not be the most fucked-up part of the US healthcare system, but it's still pretty fucked up.
The entire industry is so obviously predatory that I am tempted to believe that they still send out those paper EOB forms as aggressively as they do, because somewhere they've modeled it and determined that people will use more services if they stop doing it. It's pretty obvious by now that insurance companies don't care about actually minimizing long-term healthcare costs or ensuring positive outcomes; someone who doesn't get care today but gets deathly ill in a year is someone else's fucking problem, more than likely, so anything that keeps them home today is a win.
posted by Kadin2048 at 2:10 PM on April 30, 2019 [6 favorites]
It's led to at least one unintended pregnancy (and resulting cash-out-of-pocket abortion) that I know of, too.
It may not be the most fucked-up part of the US healthcare system, but it's still pretty fucked up.
The entire industry is so obviously predatory that I am tempted to believe that they still send out those paper EOB forms as aggressively as they do, because somewhere they've modeled it and determined that people will use more services if they stop doing it. It's pretty obvious by now that insurance companies don't care about actually minimizing long-term healthcare costs or ensuring positive outcomes; someone who doesn't get care today but gets deathly ill in a year is someone else's fucking problem, more than likely, so anything that keeps them home today is a win.
posted by Kadin2048 at 2:10 PM on April 30, 2019 [6 favorites]
My dad definately got EOBs for my inpatient psychaitric care related to his abuse and my subsequent PTSD. Basically, the delay in recieving paper statements 15 years ago and the fact I litterally got treatment half way across the US are the only reasons he didn't show up where I was being treated. (Oh, and when I ended up in residential for an eating disorder for 45 days that was denied because it waa an exclusion on my policy so he didn't get anything about that, but that's a different 60,000 dollar story about charity care that I was insanely lucky to get, which they then sued me for. I had documentation of chartity care coverage
, somehow had unrelatedly ended up moving to the county I was sued in over 1000 miles away from my residence at the time I got treatment qualified for a probono lawyer and won the case. So it ended up actually being free. )
As it wasn't my account, I had no authorization to change paperwork settings. I tired.
Thankfully I got the mental health treatment I needed anyway. Anyway, he definately tried to seek out information in my care, and harassed me about what I had told them for awhile, which did not help my PTSD at all. As far as I know he was ultimately unsuccessful because there was never an interaction between us about me disclosing the extent of the abuse.
posted by AlexiaSky at 2:23 PM on April 30, 2019 [4 favorites]
, somehow had unrelatedly ended up moving to the county I was sued in over 1000 miles away from my residence at the time I got treatment qualified for a probono lawyer and won the case. So it ended up actually being free. )
As it wasn't my account, I had no authorization to change paperwork settings. I tired.
Thankfully I got the mental health treatment I needed anyway. Anyway, he definately tried to seek out information in my care, and harassed me about what I had told them for awhile, which did not help my PTSD at all. As far as I know he was ultimately unsuccessful because there was never an interaction between us about me disclosing the extent of the abuse.
posted by AlexiaSky at 2:23 PM on April 30, 2019 [4 favorites]
This was prior to the ACA, so my dad used the insurance to keep in contact with me threatening to cut if off if I didn't maintain a level of contact he seemed appropriate . I literally sent him a certified letter right after my 24th birthday that if he ever spoke to me again I would contact the police.
We have not interacted sense then.
Of course almost 20,000 dollars of my student loans are actually medical copays and expenses. But I'd be dead otherwise. Too bad i didn't know enough about 2008 prerecession credit and bankruptcy to be able to do it that way, but I guess I'll just pay that off forever. I have been anyway.
posted by AlexiaSky at 2:33 PM on April 30, 2019 [5 favorites]
We have not interacted sense then.
Of course almost 20,000 dollars of my student loans are actually medical copays and expenses. But I'd be dead otherwise. Too bad i didn't know enough about 2008 prerecession credit and bankruptcy to be able to do it that way, but I guess I'll just pay that off forever. I have been anyway.
posted by AlexiaSky at 2:33 PM on April 30, 2019 [5 favorites]
Detailed EOB statements are important for the policyholder to prevent fraud. Without them doctors can bill insurance for procedures that were not done and the patient/policyholder would be none the wiser. I don't know what the solution to this problem is but hiding what procedure the provider is billing the insurance for is not it.
posted by TestamentToGrace at 2:46 PM on April 30, 2019 [2 favorites]
posted by TestamentToGrace at 2:46 PM on April 30, 2019 [2 favorites]
Salvador (and other young adults still on their parents' insurance plans) needs to whip out his insurance card and check out his carrier's website.
Some carriers provide the option for dependents over the age of 18 to create their own accounts and have their EOBs sent to them electronically. I could not access my husband's or son's information with Aetna or United Healthcare. HIPAA FTW!
posted by MissySedai at 3:21 PM on April 30, 2019 [10 favorites]
Some carriers provide the option for dependents over the age of 18 to create their own accounts and have their EOBs sent to them electronically. I could not access my husband's or son's information with Aetna or United Healthcare. HIPAA FTW!
posted by MissySedai at 3:21 PM on April 30, 2019 [10 favorites]
I don't know what the solution to this problem is but hiding what procedure the provider is billing the insurance for is not it.
Universal health care which provides a way for young adults to get the care they need on their own terms rather than through dependent benefits would ease some of this. Barring this, public PrEP clinics and subsidies for PrEP might be an option. The one in my city is only open one day a week though.
I just went through HIV tester/counseling training and one of the things we stress is the development of a realistic prevention plan with the client that is culturally and contextually sensitive to the patient's needs. Because while HIV kills, so can partner and family violence.
posted by GenderNullPointerException at 3:21 PM on April 30, 2019 [11 favorites]
Universal health care which provides a way for young adults to get the care they need on their own terms rather than through dependent benefits would ease some of this. Barring this, public PrEP clinics and subsidies for PrEP might be an option. The one in my city is only open one day a week though.
I just went through HIV tester/counseling training and one of the things we stress is the development of a realistic prevention plan with the client that is culturally and contextually sensitive to the patient's needs. Because while HIV kills, so can partner and family violence.
posted by GenderNullPointerException at 3:21 PM on April 30, 2019 [11 favorites]
I volunteer on a crisis line and basically every week I talk to someone who is seriously mentally ill and suicidal but won't seek care because they are on the parents insurance and don't want them to know they need to see a counselor or psychiatrist at all, much less get inpatient treatment for imminent risk of suicide. This piece of the system has killed young people I'm sure.
Being in the ~nightlife~ scene for god, 15 years i've seen more than a few times someone refusing to go to, or take someone else to the ER because their parents would find out they had been admitted because they were drugged, and to a lesser extent because of possible overdose.
It made me so goddamn angry every time, more at the system than anything else. Shit, force them to talk to a social worker even but don't require that disclosure.
I avoided doing trans stuff before i was on my own insurance because i wanted to come to my own terms/peace/start doing things on my own before i talked to my parents, and i knew my mom would like show up and sit in my room while i was at work after calling me 900 times if this scenario occurred and i didn't want to talk to her.
posted by emptythought at 3:26 PM on April 30, 2019 [8 favorites]
Being in the ~nightlife~ scene for god, 15 years i've seen more than a few times someone refusing to go to, or take someone else to the ER because their parents would find out they had been admitted because they were drugged, and to a lesser extent because of possible overdose.
It made me so goddamn angry every time, more at the system than anything else. Shit, force them to talk to a social worker even but don't require that disclosure.
I avoided doing trans stuff before i was on my own insurance because i wanted to come to my own terms/peace/start doing things on my own before i talked to my parents, and i knew my mom would like show up and sit in my room while i was at work after calling me 900 times if this scenario occurred and i didn't want to talk to her.
posted by emptythought at 3:26 PM on April 30, 2019 [8 favorites]
I know at least one person who believed his employer would get a copy of his health records. I'm not even 100% sure he was wrong.
The problem is the multiple chains of dependence - from employer to worker to dependent - relationships of power.
On Universal Healthcare, though, if those EOB reports were going to ... the government? This current government? It would probably be just as bad. The government probably wouldn't cover PrEP anyway - but even if it did, any insurance program you could imagine, no matter how independent it was, a lot of people would assume (possibly correctly) that it would reflect and enact the biases and bigotry of the executive. And that bad things would happen if you showed it you were gay and HIV pos. It would be a very reasonable worry, and very hard to disprove.
And there are other examples besides this one - imagine if you wanted to have a career in government, a job where you get a security clearance. Even if the government says that information really is strictly private, you could be forgiven for not believing them. In my hypothetical world. That's gone a bit far astray.
posted by Rainbo Vagrant at 3:58 PM on April 30, 2019 [2 favorites]
The problem is the multiple chains of dependence - from employer to worker to dependent - relationships of power.
On Universal Healthcare, though, if those EOB reports were going to ... the government? This current government? It would probably be just as bad. The government probably wouldn't cover PrEP anyway - but even if it did, any insurance program you could imagine, no matter how independent it was, a lot of people would assume (possibly correctly) that it would reflect and enact the biases and bigotry of the executive. And that bad things would happen if you showed it you were gay and HIV pos. It would be a very reasonable worry, and very hard to disprove.
And there are other examples besides this one - imagine if you wanted to have a career in government, a job where you get a security clearance. Even if the government says that information really is strictly private, you could be forgiven for not believing them. In my hypothetical world. That's gone a bit far astray.
posted by Rainbo Vagrant at 3:58 PM on April 30, 2019 [2 favorites]
I know at least one person who believed his employer would get a copy of his health records. I'm not even 100% sure he was wrong.
And then you have the issue of Carve Outs(which i could not find a non-spammy seeming link for a reference on), where your scummy employer, with the assistance of their scummy complicit insurance company, decide "we aren't covering any of that sexual health or gay stuff" which is, of course, legal in most of the country.
And this isn't always obvious, or adequately disclosed without digging. And if you want to challenge it? Well you gotta go disclose to your employer! Good times!
posted by emptythought at 4:12 PM on April 30, 2019 [5 favorites]
And then you have the issue of Carve Outs(which i could not find a non-spammy seeming link for a reference on), where your scummy employer, with the assistance of their scummy complicit insurance company, decide "we aren't covering any of that sexual health or gay stuff" which is, of course, legal in most of the country.
And this isn't always obvious, or adequately disclosed without digging. And if you want to challenge it? Well you gotta go disclose to your employer! Good times!
posted by emptythought at 4:12 PM on April 30, 2019 [5 favorites]
I'm unsure that people get EOB (explanation-of-benefits) for prescription medicine benefits specifically, outside of line-itemizations for surgery, and I wonder if Slate did the work to answer that question in much detail, as it relates to PrEP. I do think that digitization of medical records, separate from EOBs, might make it easier to see what prescriptions have been given to a patient. So the question may be about access to PMI records, generally.
Proxy might be given automatically to a parent of a minor to access medical records, but under HIPAA, proxy would not generally be given to the parent of an adult child without that adult's consent, even if they are on a shared plan. So, in theory, HIPAA + being over 18 should mitigate some of the privacy risk for Salvador.
Still, in absolute terms of privacy, whether or not PrEP is generic would probably not matter if the issue is that the prescription itself is documented somewhere. A generic option might make insurance options cheaper so that an adult child would not need to be on a shared plan with parents, though, and it would make the medication more widely available. A universal coverage option would also reduce or eliminate dependence on parents for health insurance.
posted by They sucked his brains out! at 5:49 PM on April 30, 2019 [1 favorite]
Proxy might be given automatically to a parent of a minor to access medical records, but under HIPAA, proxy would not generally be given to the parent of an adult child without that adult's consent, even if they are on a shared plan. So, in theory, HIPAA + being over 18 should mitigate some of the privacy risk for Salvador.
Still, in absolute terms of privacy, whether or not PrEP is generic would probably not matter if the issue is that the prescription itself is documented somewhere. A generic option might make insurance options cheaper so that an adult child would not need to be on a shared plan with parents, though, and it would make the medication more widely available. A universal coverage option would also reduce or eliminate dependence on parents for health insurance.
posted by They sucked his brains out! at 5:49 PM on April 30, 2019 [1 favorite]
I think any form of reform as deep as universal health care would also require reform of health care privacy and also protections against politicizing benefits. Likely countries that have universal health care have ways to guard against this problem. It's a non-starter with the current administration but I don't see why it shouldn't be a long-term privacy goal. Extended status as a family dependent is a patch on a broken system that includes $1,500 a month for Truvada and $40K for antivenin.
posted by GenderNullPointerException at 6:26 PM on April 30, 2019
posted by GenderNullPointerException at 6:26 PM on April 30, 2019
True, we get an EOB for every doctors visit, but i have never gotten one for prescriptions.
I'm unsure that people get EOB (explanation-of-benefits) for prescription medicine benefits specifically
In my experience with 3 different insurers over the years due to different employers (Cigna, Blue Cross, UnitedHealthCare/UMR), drug prescription records are accessed through a portal that is separate from general medical claim records. This is probably due to the fact that the prescription benefits are actually managed by Prescription Benefit Managers (PBMs), not the insurance company.
Thus, detailed prescription EOBs are available, but only by accessing a separate website. This is usually a link or menu item on your insurer's website, named something like "View/Manage Prescription Benefits".
PBMs contribute to the high price of drugs that patients pay:
I'm unsure that people get EOB (explanation-of-benefits) for prescription medicine benefits specifically
In my experience with 3 different insurers over the years due to different employers (Cigna, Blue Cross, UnitedHealthCare/UMR), drug prescription records are accessed through a portal that is separate from general medical claim records. This is probably due to the fact that the prescription benefits are actually managed by Prescription Benefit Managers (PBMs), not the insurance company.
Thus, detailed prescription EOBs are available, but only by accessing a separate website. This is usually a link or menu item on your insurer's website, named something like "View/Manage Prescription Benefits".
PBMs contribute to the high price of drugs that patients pay:
PBMs began as middlemen who contracted with insurance companies to manage prescription claims. They’ve since grown into bureaucratic behemoths who design co-pays and formularies and negotiate with pharmaceutical companies as well as pharmacies.posted by cynical pinnacle at 6:35 PM on April 30, 2019 [1 favorite]
Because pharmaceutical companies ultimately need their products to make it onto an insurer’s formulary, they’re incentivized to give PBMs favorable deals. And because pharmacies need to be in the networks of major insurers, PBMs have a ton of leverage over them as well.
Fact 4: The difference between the list price set by the pharmaceutical company and the price the PBM ultimately negotiates is called the “rebate,” and the PBM may or may not pass all or part of those savings on to the insurer and patients, depending on its contract with the insurer. One result is that drugs may make it onto formularies based on how much money a PBM can make off of them, not necessarily because of superior effectiveness.
Fact 5: Any difference between the money the insurer pays to the PBM and the price the PBM negotiates with pharmacies is called the “spread,” and it’s another opportunity for PBMs to make mystery money.
Part of that broken system is that health care pricing, at least from my perspective, feels like a weird combination of occult conspiracy, pyramid scheme, and game show. And I'm not (thankfully) in the spot of having to deal with the house-sized bills.
posted by GenderNullPointerException at 6:50 PM on April 30, 2019 [2 favorites]
posted by GenderNullPointerException at 6:50 PM on April 30, 2019 [2 favorites]
Detailed EOB statements are important for the policyholder to prevent fraud. Without them doctors can bill insurance for procedures that were not done and the patient/policyholder would be none the wiser. I don't know what the solution to this problem is but hiding what procedure the provider is billing the insurance for is not it.
When I called BlueCross to tell them to stop sending my statements they said something like that. I said "I don't care if you're being defrauded. I'd be perfectly happy to see you go under so you can stop lobbying against decent healthcare. Stop sending me mail."
posted by If only I had a penguin... at 6:53 PM on April 30, 2019 [1 favorite]
When I called BlueCross to tell them to stop sending my statements they said something like that. I said "I don't care if you're being defrauded. I'd be perfectly happy to see you go under so you can stop lobbying against decent healthcare. Stop sending me mail."
posted by If only I had a penguin... at 6:53 PM on April 30, 2019 [1 favorite]
This is a problem in Canada as well. Although we do have partial universal health care there are many things not covered by the Canada Health Act, and coverage for many things varies by province. In Ontario the Liberal government introduced OHIP+, providing free coverage for over 4400 prescriptions for all people age 24 and under, starting January 1st 2018. This coverage included PrEP, PEP (post-exposure prophylaxis), HIV medications, anti-depressants (and other mental health medications), ADHD medications, birth control pills and IUDs.
Then the Liberals lost the next provincial election. As of April 1st 2019 the new Conservative government, headed by Rob Ford (brother of Toronto's infamous mayor Doug Ford), rolled back those benefits for anyone who had private health insurance coverage (through their parents, their school, or their employer), even if that insurance does not provide the same level of coverage as OHIP+.
How young women's access to birth control in Ontario will change April 1 [CBC News - March 26th 2019]
Changes to OHIP+ could impact young people seeking birth control [Global News - April 2nd 2019]
OHIP+ changes force Hamilton student into health dilemma with risky consequences [CBC News - April 26th 2019]
OHIP+ changes leave students struggling to pay for medication [CBC News - April 27th 2019]
I haven't seen a mainstream news article specifically mentioning PrEP yet, but it is affected, and would cost young people at least $250 a month (for the generic) if they find it's not covered under their private insurance plan or they're unwilling to give up their privacy by submitting a claim to a parents' insurance plan.
posted by Secret Sparrow at 9:47 AM on May 1, 2019 [1 favorite]
Then the Liberals lost the next provincial election. As of April 1st 2019 the new Conservative government, headed by Rob Ford (brother of Toronto's infamous mayor Doug Ford), rolled back those benefits for anyone who had private health insurance coverage (through their parents, their school, or their employer), even if that insurance does not provide the same level of coverage as OHIP+.
How young women's access to birth control in Ontario will change April 1 [CBC News - March 26th 2019]
Changes to OHIP+ could impact young people seeking birth control [Global News - April 2nd 2019]
OHIP+ changes force Hamilton student into health dilemma with risky consequences [CBC News - April 26th 2019]
OHIP+ changes leave students struggling to pay for medication [CBC News - April 27th 2019]
I haven't seen a mainstream news article specifically mentioning PrEP yet, but it is affected, and would cost young people at least $250 a month (for the generic) if they find it's not covered under their private insurance plan or they're unwilling to give up their privacy by submitting a claim to a parents' insurance plan.
posted by Secret Sparrow at 9:47 AM on May 1, 2019 [1 favorite]
I know this isn't the point of the article, but PrEP is not just for gay men. I hate the framing of this.
posted by archimago at 10:15 AM on May 1, 2019 [1 favorite]
posted by archimago at 10:15 AM on May 1, 2019 [1 favorite]
When I was in college I went on the birth control pill. I did not run it through my parent's insurance, because I didn't want to deal with their judgements. But when I had my wisdom teeth out, my mom came to pick me up at the dentist, and drive me back to my dorm. Since I was groggy she filled my dental painkiller prescription for me, at the same pharmacy I normally filled my birth control prescription at. The next month when I filled my birth control prescription, it was inexplicably cheaper. Awesome, right? Well not so much. What I didn't understand until later, was that this was because they put the birth control pill on my parent's insurance, whose card they'd put on file when my mom had filled that dental prescription.
Couple weeks later the insurance company sent my parents a letter asking us to change to a cheaper generic birth control pill. Cue unpleasant phone call with the parents. Sigh.
That was decades ago. It's ridiculous that we're still mired in the same crappy system. :-(
posted by elizilla at 10:34 AM on May 1, 2019 [5 favorites]
Couple weeks later the insurance company sent my parents a letter asking us to change to a cheaper generic birth control pill. Cue unpleasant phone call with the parents. Sigh.
That was decades ago. It's ridiculous that we're still mired in the same crappy system. :-(
posted by elizilla at 10:34 AM on May 1, 2019 [5 favorites]
You don't need to care about insurance companies being defrauded to have reason to care whether your insurance plan is paying out for non-existant procedures. There's plenty of situations where your total payout matters both as an individual and as a member of the group. And if fraudsters are listing procedures you didn't actually get you're gonna have a bad time if you subsequently have that procedure and the insurance company doesn't pay for the real event. I'd also personally assume that a doc who is willing to lie to the insurance company to make an extra buck is also willing to lie to you about you needing certain treatment to make another buck.
posted by phearlez at 11:48 AM on May 1, 2019 [2 favorites]
posted by phearlez at 11:48 AM on May 1, 2019 [2 favorites]
living outside major cities, where physicians tend to be less familiar with the drug
True story: two years ago when I first inquired to my then-PCP (a kindly, middle-aged man) he talked me out of it, with some explanation around the lines of that "it's usually only prescribed for people whose partners are already HIV+ to prevent them from contracting it" which I knew even at the time was thoroughly false. He frankly seemed a little bewildered when I brought it up in the first place, like he was either not completely familiar with the drug, which was still somewhat new, or never had a patient ask about it before (or... didn't have any openly LGBT patients? A possibility). This was in Fremont, CA, a fairly large, diverse suburb in the SF Bay Area. I ended up getting my first PrEP prescription over a year later, from a different doctor who specialized in sexual health for LGBT patients.
Salvador has also considered going to Planned Parenthood, though he’s “intimidated by the process of making an appointment and just going there by [himself]
I understand this reluctance, at least before I actually went the first time; I wish there wasn't the politicized stigma. The religious right and Republican scaremongers have somewhat successfully vilified and reduced the public perception of Planned Parenthood to the "abortion clinic for desperate lost souls," and it's hard for an organization that relies on donations and constantly threatened to be defunded to launch any kind of PR to dispute that.
Planned Parenthood is a health clinic, and not just for women seeking abortions. My current insurance steered me to PP after identifying it as the most affordable option for both STD/HIV testing and acquiring a PrEP prescription but the thought of going there instead of a "conventional" health clinic (like Kaiser, which I used to have) gave me pause, even when I knew better, for ultimately irrational reasons: I thought I was being selfish for taking advantage of their free/low-cost care when I had insurance and a full-time job, I felt I would be out of place as the only male amongst their mostly woman clientele, and that as a male everyone would assume I was there for one of a few reasons, none of them good.
The clinic was nothing like what I feared. The nurse practitioners were knowledgeable about PrEP and were not hesitant to issue a prescription once I fulfilled the requirements, said STD/HIV testing requirements were either free or of trivial cost (versus a time I went to Stanford Medical and they billed me $500 for a single test), I wasn't their only male patient or the nurse practitioner's only patient requesting PrEP, and... no one in the waiting room or otherwise cares why you're there. They have charts throughout the office listing how much each of their services cost them to provide, which is the extent to which they have ever solicited donations; I make it a point to donate more than what I ask for when I go in.
There are other barriers to getting affordable access to PrEP, even when insured. Insurance is itself one of them. I have UnitedHealth now, and by default with "specialty" (expensive) medications like Truvada they insist you go through their mail-in pharmacy, Briova. For me, there's a major problem with this: the aforementioned Planned Parenthood couldn't send prescriptions to places that aren't in their system, like some faraway non-brick-and-mortar mail pharmacy warehouse based in Las Vegas or Indiana. In my case, I had to make numerous back and forth calls to some UHC call center, the Briova call center, PP, and the Target retail pharmacy I ultimately ended up using, in order to arrange an exemption from their mail-order service.
It felt like the first time in my life I ever had to fight for access to a medication, despite having the advantage of employer insurance to qualify me for the Gilead copay card (which I had to apply for in advance) that greatly reduces the cost. 35 year-old me, 10+ years older than Salvador, just barely had the gumption and persistence to navigate the system. I'm not sure 18-to-25 year-old me would have, not by himself certainly, and he wouldn't have the Gilead discount either. Early 20-something me, broke as he was, probably wouldn't have bothered, and I speculate that many young people, a big chunk of the drug's target demographic, won't either.
Famously, UnitedHealth is also the company that tried to shame-deter a patient seeking coverage for a Truvada prescription, citing his "high risk homosexual behavior," so there's that. Why I can even get it now was the result of real-life SJWs--using this term in a positive way--shining a light on UHC's practices and shaming them back into reversing their policies.
Mail-order pharmacies have privacy issues of their own, particularly when living with people (i.e. suspicious or nosy parents) who may handle your mail in your absence, like small mysterious packages with a pharmacy address suddenly arriving at your doorstep every 30 days.
posted by jpolorolu at 5:13 PM on May 1, 2019 [1 favorite]
True story: two years ago when I first inquired to my then-PCP (a kindly, middle-aged man) he talked me out of it, with some explanation around the lines of that "it's usually only prescribed for people whose partners are already HIV+ to prevent them from contracting it" which I knew even at the time was thoroughly false. He frankly seemed a little bewildered when I brought it up in the first place, like he was either not completely familiar with the drug, which was still somewhat new, or never had a patient ask about it before (or... didn't have any openly LGBT patients? A possibility). This was in Fremont, CA, a fairly large, diverse suburb in the SF Bay Area. I ended up getting my first PrEP prescription over a year later, from a different doctor who specialized in sexual health for LGBT patients.
Salvador has also considered going to Planned Parenthood, though he’s “intimidated by the process of making an appointment and just going there by [himself]
I understand this reluctance, at least before I actually went the first time; I wish there wasn't the politicized stigma. The religious right and Republican scaremongers have somewhat successfully vilified and reduced the public perception of Planned Parenthood to the "abortion clinic for desperate lost souls," and it's hard for an organization that relies on donations and constantly threatened to be defunded to launch any kind of PR to dispute that.
Planned Parenthood is a health clinic, and not just for women seeking abortions. My current insurance steered me to PP after identifying it as the most affordable option for both STD/HIV testing and acquiring a PrEP prescription but the thought of going there instead of a "conventional" health clinic (like Kaiser, which I used to have) gave me pause, even when I knew better, for ultimately irrational reasons: I thought I was being selfish for taking advantage of their free/low-cost care when I had insurance and a full-time job, I felt I would be out of place as the only male amongst their mostly woman clientele, and that as a male everyone would assume I was there for one of a few reasons, none of them good.
The clinic was nothing like what I feared. The nurse practitioners were knowledgeable about PrEP and were not hesitant to issue a prescription once I fulfilled the requirements, said STD/HIV testing requirements were either free or of trivial cost (versus a time I went to Stanford Medical and they billed me $500 for a single test), I wasn't their only male patient or the nurse practitioner's only patient requesting PrEP, and... no one in the waiting room or otherwise cares why you're there. They have charts throughout the office listing how much each of their services cost them to provide, which is the extent to which they have ever solicited donations; I make it a point to donate more than what I ask for when I go in.
There are other barriers to getting affordable access to PrEP, even when insured. Insurance is itself one of them. I have UnitedHealth now, and by default with "specialty" (expensive) medications like Truvada they insist you go through their mail-in pharmacy, Briova. For me, there's a major problem with this: the aforementioned Planned Parenthood couldn't send prescriptions to places that aren't in their system, like some faraway non-brick-and-mortar mail pharmacy warehouse based in Las Vegas or Indiana. In my case, I had to make numerous back and forth calls to some UHC call center, the Briova call center, PP, and the Target retail pharmacy I ultimately ended up using, in order to arrange an exemption from their mail-order service.
It felt like the first time in my life I ever had to fight for access to a medication, despite having the advantage of employer insurance to qualify me for the Gilead copay card (which I had to apply for in advance) that greatly reduces the cost. 35 year-old me, 10+ years older than Salvador, just barely had the gumption and persistence to navigate the system. I'm not sure 18-to-25 year-old me would have, not by himself certainly, and he wouldn't have the Gilead discount either. Early 20-something me, broke as he was, probably wouldn't have bothered, and I speculate that many young people, a big chunk of the drug's target demographic, won't either.
Famously, UnitedHealth is also the company that tried to shame-deter a patient seeking coverage for a Truvada prescription, citing his "high risk homosexual behavior," so there's that. Why I can even get it now was the result of real-life SJWs--using this term in a positive way--shining a light on UHC's practices and shaming them back into reversing their policies.
Mail-order pharmacies have privacy issues of their own, particularly when living with people (i.e. suspicious or nosy parents) who may handle your mail in your absence, like small mysterious packages with a pharmacy address suddenly arriving at your doorstep every 30 days.
posted by jpolorolu at 5:13 PM on May 1, 2019 [1 favorite]
My original comment is already long enough, but as an add-on thought: the second to last paragraph of the article seems to imply going to Planned Parenthood as an alternative way, vs. going to the doctor, of obtaining PrEP free/cheaply, without insurance. This, to my knowledge, is not true. PP have nurse practitioners who can issue a prescription for the drug, but they don't distribute it out their office (like condoms) or provide assistance in paying for it, although they may give referrals to outside programs that do.
It's the same result as going to a doctor. Salvador would still have to have the prescription sent to a pharmacy to fill it and then find a way to actually pay for it, with or without insurance covering part of the costs.
posted by jpolorolu at 5:45 PM on May 1, 2019
It's the same result as going to a doctor. Salvador would still have to have the prescription sent to a pharmacy to fill it and then find a way to actually pay for it, with or without insurance covering part of the costs.
posted by jpolorolu at 5:45 PM on May 1, 2019
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