PReP avoiders

[BootmanLA]

10 hours ago, BareLover666 said:

If you do get infected, what happens then with regards to cost? Would you be able to effort treatment then; Would treatment be fully covered by whatever health-insurance or -plan you use?

Paradoxically, here in the US, with our fucked-up health care payment and delivery system, a poor person is actually in a better place, in terms of affording care, if he's HIV-positive rather than HIV-negative and seeking PrEP.

We have a federal program under what's known as the Ryan White Act (named for a hemophiliac boy who contracted HIV from a blood transfusion and died of AIDS some years later, early in the epidemic) that provides billions of dollars in grants to states, local governments, and community groups for fighting HIV. Most states have a program where anyone with HIV who makes less than a certain dollar amount can have fully-paid health insurance on the private market, complete with prescription drug coverage. In states that have expanded Medicaid, these programs generally kick in for people who make more than the maximum for Medicaid, but less than the maximum for the Ryan White-funded program. The idea is that providing this coverage keeps these people healthy, and productive, so that they (generally) work and pay taxes to help keep it all going.

Right now, the biggest "gap" is in the 13 states that have not expanded Medicaid (the US health care program for the poor) as allowed under the Affordable Care Act. In those states, "traditional" Medicaid only covers certain poor people (most often: children, pregnant women, and the disabled), and if you are not in one of those groups, assistance is limited or unavailable. In order to take advantage of the ACA's subsidies for health insurance, you have to make a certain amount of money. So there's a gap between the poorest of the poor and those who make enough to qualify for an ACA plan, in those 13 states, where you're just out of luck.

Lily, however, lives in Oregon, so she lives in a state where Medicaid WAS expanded. It might be a stretch to make the premiums, but if she's employed, there should be an ACA plan within reach; and if she's not, there should be Medicaid assistance available.

[fuckholedc]

18 hours ago, fskn said:

For other Americans who come across this thread and who are interested in PrEP, it is now free in almost all cases.

 

That's true.  Now.

However that was not true as recently as 2020.  

Prior to October, 2019 I was able to get on an insurance plan that covered PrEP at a reasonable cost for me (I'm not sure when I got on PrEP - certainly not before October 2018).  However my insurance plan changed and insurance plans in the USA are opaque - the details in many cases are completely unclear.  When the new plan kicked in and I ran out of PrEP, my refill was going to cost me over $5000 for a three month supply.  I was stunned (and tried to get a picture of the cost).  I in fact reported this fact to the Washington Blade for them to look into.  I heard nothing back from them.

Yet another reason why the ACA, while a step forward, is not even close to universal health care (I'd had true believer Democrats who have actually lived in countries that did have universal health care argue otherwise).

The fact was that this was a policy change (and incredibly a policy change under a Nazi-leaning government [the Republicans under that grifter from Queens]).  However the policy could be changed again and people could indeed have to pay the full cost for PrEP, since the USA is primarily about control, capitalism and homophobia. 

 

[fskn]

52 minutes ago, fuckholedc said:

That's true.  Now.

Admittedly, and it is very important to talk about the situation in 2022 to dispel persistent myths that PrEP is unaffordable.

It makes me angry that you had to go through a period of uncertainty about your PrEP coverage.

PrEP's inclusion in the preventive care mandate dates back to June, 2019. Even today, some private insurers surely try to shirk their legal responsibilities, so patients have to be vigilant. Your state's insurance regulator is the place to start when there are problems. Patients shouldn't have to be advocates, but as you say, insurance plans can be "opaque".

Unless your old plan was Medicaid (low-income earners), Medicare (seniors) or VA (veterans), you would have been eligible to have Gilead pay all or most of your $5,000 out of pocket Truvada renewal cost, at least one time that year, with a simple phone call and no income ceiling. Today, Gilead's Advancing Access patient assistance program pays up to $7,200 per year, an amount that has risen over time and that was switched long ago from periodic to lump-sum, to accommodate people whose insurance plans have annual deductibles. (Again, deductibles are no longer a concern for most, due to PrEP's inclusion in the preventive care mandate. The rare person with a grandfathered plan who wants to use Gilead's patient assistance program now that generic Truvada equivalents have been approved, has to have a Truvada prescription written so that generic substitution is not allowed, or to be on Descovy, for which no generic exists.)

52 minutes ago, fuckholedc said:

Yet another reason why the ACA, while a step forward, is not even close to universal health care

I agree completely. That said, the ACA was a significant legislative achievement. It has also proven, in its phases of implementation, to be a big practical improvement. This is true down even to the details, like the regulatory requirement that when your insurer gives you a list of doctors who are in your plan, the list must be accurate and the doctors listed must be ones who are accepting new patients. Before the ACA, those lists contained nonsense.

The ACA is also a legislative achievement that can never be repeated, as gerrymandering and the elimination of voter protections make future Democratic victories numerically untenable.

52 minutes ago, fuckholedc said:

the policy could be changed again and people could indeed have to pay the full cost for PrEP

This is certainly possible, but it's more likely to occur through judicial action (the same religious nuts who think birth control is murder are litigating the preventive care mandate; apparently, all forms of preventive care are also unchristian). If and when Democrats lose all three of: the presidency, the Senate majority, and the House majority, then it could also happen through legislative action. At that point, my advice to people who care about their health would be to move to states with strong state-level health insurance regulations and adequate safety net programs, California being an example. Again, it shouldn't be that way, but health care (in general) has such a big impact on our lives that it is worth factoring it in to our decisions about where to live.

I tried to cover even the worst case in my post. If we do lose the preventive care mandate, or the Affordable Care Act itself, Aurobindo's generic Truvada at about $1 per pill, combined with intermittent or "2-1-1" PrEP in the 2021 CDC guidelines, would allow many people to continue their PrEP care.

But for now, let us have no part in perpetuating a belief that PrEP is expensive and inaccessible.

Edited January 30, 2022 by fskn
Typo

[BootmanLA]

50 minutes ago, fuckholedc said:

The fact was that this was a policy change (and incredibly a policy change under a Nazi-leaning government [the Republicans under that grifter from Queens]).  However the policy could be changed again and people could indeed have to pay the full cost for PrEP, since the USA is primarily about control, capitalism and homophobia. 

 

Don't be so quick to give Hair Furor much credit for this. The first steps happened under his administration, but they happened without any help from his political appointees. Rather, the U.S. Preventive Services Task Force gave PrEP an "A" rating as a means of preventing disease - something not a lot of medications and treatments get - and because of that, a provision of the ACA kicked in (remember, Don the Con tried like hell to repeal the ACA and was furious that John McCain voted against the repeal). That ACA provision requires insurers to provide preventative services with an "A" rating to insurees completed covered by the plan.

Trump's administration did grudgingly put forth guidance that said insurers couldn't make people pay out of pocket for it (that is, they said the primary cost had to be covered). But their guidance didn't address copays, which can be substantial - some insurers were still charging hundreds of dollars a month in copays even though it was a covered cost.

It took the Biden administration to clarify - this summer - that the rule means "no copay, no fee, no nothing," which is actually what the ACA requires.

[hntnhole]

2 hours ago, fuckholedc said:

Nazi-leaning government [the Republicans under that grifter from Queens]). 

You flatter that circus-barker, and I dare not go into it further lest I get thrown off this site .....

[Lily95]

15 hours ago, BareLover666 said:

You are spot on as it is about weighing the risks and consequences of an HIV infection against the side effects.

I'd like to add that there are some side-effects that are often (1 to 10 %) reported like having trouble sleeping and abnormal dreams that could be considered mild to one person, but can subjectively be experienced as (too) severe. They of course do go away if someone stops using PrEP or changes the medication when uses as ART.

Because - like Covid-19 - this is a global pandemic that in this case hits people outside the Westen part of the world harder especially where people don't have the same kind of exces to health-care as we do, I feel there really is a need for a cure / kind of vaccination against HIV to really solve this.
I also feel it's because HIV is sexually transmissible that is one cause why there isn't been invested enough in the research to achieve this and the political leaders in our world are too much empasising on changing how we have sex. (Using condoms, monogamy, no anal-penetrative-sex).

 

If you do get infected, what happens then with regards to cost? Would you be able to effort treatment then; Would treatment be fully covered by whatever health-insurance or -plan you use?

Lets just say for me i make too much to get insurance by the state and not enough to get insurance by anyone else. My state has a really screwed up health system that makes anyone in above poor below middle class people unable to afford any insurance. I applied multiple times for state insurance but was denied because i make minimum wage. I tried to find insurance companies to get but was denied since im unable to pay for anything of their insurance. Having the cost of living and including tje cheapest housing i can find is $900 a month thats almost my whole check and the cost of gas so high and cost of food so high im actually about to lose my place.

[fskn]

@Lily95, you should never feel the need to go into your personal circumstances online. 

Here are some general tips that might be relevant, based on what you have written. They are purely for your consideration, not for a response. Some you may know, and some not. Some may apply, and some not.

Oregon is indeed a Medicaid expansion state, which means someone earning up to 133% of the federal poverty rate is eligible for Medicaid. For a 1-person household, this is a little over $17,000. If your annual income is less but you were rejected for Medicaid, please go to a city or county health department or find a local non-profit health clinic. They will assign you a caseworker who can help you to apply successfully.

Above that income level, everything is dictated by standard Affordable Care Act subsidy rules. If you applied for private insurance directly from an insurer, you were not offered a subsidy, because plans sold directly by insurers — though identical to plans sold through an ACA marketplace — are incompatible with ACA premium subsidies.

Also, even if you did apply through an ACA marketplace, but in 2020 or before, subsidies have been substantially increased for 2021 and 2022.

Please check the appropriate state or federal ACA marketplace (I don't know whether Oregon is one of the states with its own marketplace, or whether it simply sends people to the federal marketplace.) Many local government agencies and non-profits can assist you with an ACA health plan application. They receive special money to provide this help.

Getting health insurance requires research, paperwork, and patience, but it is worth the effort. Everyone deserves health insurance. You are worth it!

[chipygmalion80]

On 1/30/2022 at 10:46 PM, fskn said:

@Lily95, you should never feel the need to go into your personal circumstances online. 

Here are some general tips that might be relevant, ...

For a 1-person household, this is a little over $17,000. If your annual income is less

Less?!  Evidently $17k isn't low enough for politicians.

@fskn it sounds like you mean well and wrote to help but I've found US policy on this topic to be insulting to people.

In a past life, I sought State & charitable assistance with meds.  My experience was: the policies would have preferred that I was living on the street. 

Able to pay rent?  Disqualified. 

Have a job?  Disqualified.

etc.  At least my charity's advisor did find a list of where (and when) to stand in food lines. 🙂

It was especially insulting to keep getting asked:

"Do you need help with 'use'?"  <-- as in a user

For a comparison, when I lived in Germany, the national healthcare system was basically:

you live in our country, so here is your coverage. 

Though, what folks don't talk about is that, once I got a job in Germany, their taxes were *hefty*.  IIRC, my German taxation rate was near 50% -- and I earned very little there!

 

[fskn]

@chipygmalion80, what's important is that everything changed once states (like Oregon) opted to expand Medicaid under the Affordable Care Act. The kinds of rules you describe were indeed insulting and unfair, and they applied even in rich states like California, before the ACA and Medicaid expansion. They no longer apply.

Most of all, there are ways for patients in all different circumstances to get PrEP free of charge in the US. I listed many specific approaches, some involving insurance and some not, in an earlier post. A "PrEP navigator" in a community clinic or a public health department knows of even more strategies. (PrEP navigator positions, now common throughout the country, are paid for with federal funds.)

In the US, cost is not a barrier to PrEP access. Perceived cost is, and it will remain so as long as people rely on anecdotes instead of seeking information about real and specific policies and programs that exist today (for people who decide that they want PrEP, a personal decision, obviously).

The Europeans do well with universal health coverage but it too has gaps (which is not to say that it is worse than the American alternative, only to point out that some of the same populations are underserved).

Europe has a thriving labor market for undocumented immigrants (in France, Switzerland, Germany, etc., the people who clean the fast trains, factory-bake the tasty croissants, do the unskilled construction work for the shiny new office towers, and lovingly care for the elderly at home). Undocumented immigrants are not served by European health insurance schemes; it's as if the people don't exist.

As far as serving LGBT people goes, European countries have been much slower to approve and cover PrEP. The US is far ahead, in terms of having approved all three empirically-proven HIV PrEP products: Truvada (or generic), Descovy, and Apretude (the new injectable) and having mandated that insurers cover all PrEP-related services at no out-of-pocket cost. (This is the preventive care mandate of the ACA.)

[Phallarchist]

5 hours ago, fskn said:

European countries have been much slower to approve and cover PrEP.

This site claims that a large swath of Western Europe at least is covered: [think before following links] https://www.aidsmap.com/news/jan-2021/european-prep-programmes-face-two-big-issues-how-get-more-people-coming-forward-and

[BootmanLA]

On 3/19/2022 at 9:21 PM, fskn said:

In the US, cost is not a barrier to PrEP access. Perceived cost is, and it will remain so as long as people rely on anecdotes instead of seeking information about real and specific policies and programs that exist today (for people who decide that they want PrEP, a personal decision, obviously).

While this is broadly true, the problem remains that in thirteen states, where Medicaid has not been expanded, there is a huge issue for those with incomes too high for traditional Medicaid (which in some states is restricted to children, pregnant women, and the totally disabled) but not enough to even warrant a subsidy for private insurance, when there is no employer plan (or no affordable one) in the person's workplace.

In those states, part-time work (or even minimum wage full time work) at a place with fewer than 50 employees means (a) no Medicaid, (b) no Expanded Medicaid, (c) no subsidy for an ACA plan, and (d) no mandate for an employer to provide coverage. How many people that includes is a matter of contention, but there's no question it's in the millions of people among those 13 states.

And because PrEP coverage mandates affect the insurer (including Medicaid), not the insured individual, there's still work to be done.

[viking8x6]

I don't think that is correct, @BootmanLA  My understanding (based on personal experience) is that there is at least some ACA subsidy for all incomes less than 400% of the Federal poverty level, for people who aren't enrolled in Medicaid. Those subsidies cover most of the premium cost for "silver tier" plans at incomes below about 120% of the FPL, and special plans area also available that reduce co-pays, deductibles, and out-of-pocket maximums to the insured.

[BootmanLA]

5 hours ago, viking8x6 said:

I don't think that is correct, @BootmanLA  My understanding (based on personal experience) is that there is at least some ACA subsidy for all incomes less than 400% of the Federal poverty level, for people who aren't enrolled in Medicaid. Those subsidies cover most of the premium cost for "silver tier" plans at incomes below about 120% of the FPL, and special plans area also available that reduce co-pays, deductibles, and out-of-pocket maximums to the insured.

Everything I'm finding online - from HHS, insurance advisory sites, and the like - suggests that the "hole" still exists for employed people in states without expanded Medicaid.

Verbiage on more "authoritative" sites isn't expressed very clearly, but this summary from GoodRx (which I trust) sums it up clearly:

"Generally, if your household income is 100% to 400% of the federal poverty level, you will qualify for a premium subsidy. This means an eligible single person can earn from $12,880 to $51,520 and qualify for the tax credit. A family of three would qualify with income from $21,960 to $87,840. The range would be $26,500 to $106,000 for a family of four. (Income limits may be higher in Alaska and Hawaii because the federal poverty level is higher in those states.)

The American Rescue Plan Act of 2021 also extended subsidy eligibility to some people earning more than 400% of the federal poverty level.

If your income is below 138% of the federal poverty level, and you live in a state with expanded Medicaid coverage, you may qualify for Medicaid, based solely on your income. The Affordable Care Act enrollment process will help you sign up for Medicaid in your state.

If your income is below 100% of the federal poverty level, you are probably not eligible for savings on an ACA plan or for Medicaid solely based on income."

[fskn]

I don't understand the endless haggling.

Insurance is only one way to get PrEP at no out-of-pocket cost. Long ago I mentioned many different solutions.

Medicaid was brought up because one commentator from a state that has expanded Medicaid probably meets the income criterion.

Very low income earners in states that have not expanded Medicaid can use one of Gilead's two patient assistance programs.

One program, in which any privately insured person at any income level can enroll with a 5-minute phone call, used to be helpful for paying copayments, coinsurance and deductibles, when those still applied to PrEP care. That program is no longer of much use, due to the preventive care mandate and to the shift, by virtually all insurers, from covering brand-name Truvada to covering generics.

But the other Gilead program pays the full cost of Truvada for people who are not insured. This program has an income limit, so an application is required. Because these clients are uninsured, there's no insurer to force generic substitution. The program works specifically because the prescriber writes "dispense as written", requiring brand-name Truvada, whose cost is then paid entirely.

The same Gilead program also pays the full cost of Descovy (usually prescribed in case a prescriber finds that a patient cannot use Truvada). As I mentioned in the Apretude thread, ViiV, the manufacturer of the new PrEP injectable, has the same dual structure for its patient assistance programs. Just as with Gilead, ViiV will pay the full cost of Apretude for an uninsured, low-income patient. (And before we get fixated on testing costs, Apretude requires much less initial and ongoing safety-related testing than Truvada or Descovy, and HIV and STI tests are available for free or for a very low cost from public health departments and community clinics all over the country.)

Please stop perpetuating the myth that there's no way for some particular groups to afford PrEP.

And if you want PrEP but believe you can't afford it, go to your county health department or to a community clinic and ask for (federally funded) "PrEP navigation" services. Navigators know all of the options I've mentioned, and more.

Please, don't play any further part in discouraging people from seeking available help getting PrEP!

Edited March 22, 2022 by fskn

[PozDom]

Here in the UK prep is free to all. I recently saw someone justify not taking prep everyday as they’re not good with taking tablets regularly and yet they take daily medication for something else. If they became positive they would likely have to take hiv medication daily too so I really don’t see the flawed logic.