In the US, so much of the quality of your care and access to meds depends on where you live.
I have lived with HIV for over 26 years and have been on meds since 1996. Until 2003 I had private insurance and, generally, my care was excellent. I had access to specialists to treat not just the HIV but all the health issues one who has lived long-term with the virus is likely to have (neurological and GI issues, dermatological stuff, etc.).
The side effects of the early versions of the meds, especially in the mid-late 90s, could range from debilitating (chronic, "garden-hose" diarrhea with little or no warning) to really annoying (odd numbness in the extremities, ringing in the ears, etc). I was incredibly lucky to have worked for people who understood that some days would be better for me than others; only briefly (about six months) did I work for a corporation (not an individual entrepreneur) which took issue with the flexibilities my schedule required. In addition to coping with side-effects and associated issues, there was the sheer volume of doctor's appointments and tests which could not all be scheduled around my job.
People who live and work with HIV are square pegs for the round holes offered as employment by private corporations: in addition to all the other things I listed above, there are issues involving mental health (beginning with chronic depression, for starters) that not just effect one's ability to work effectively in certain environments, but, again, are likely to require scheduling flexibility and additional medications. We also drive up the cost of insurance in anything but the biggest pools, so there are strong incentives for people living with HIV to find work with individual entrepreneurs (like what I still do), work for non-profits or work for themselves. Most corporations find us unemployable.
Aside from issues related to work, there are other enormous incentives for guys who can work to go on disability: the primary being access to quality health care through Medicare, which, for the time being, is comparable to the best gold-plated private insurance plan. And because it is a Federally-run program, the care one gets on Medicare in Maine is the same care as one gets in California (presuming the doctors are comparable: the benefits are identical nationwide). I know at least a dozen guys (probably more) who are fit and as able to work as anybody
in theory, but who cannot return to work because of the quality of the care they get on Medicare, aside from the fact that they have special needs regarding scheduling, etc.
In order to be eligible for SSDI and Medicare, though, one must be
provably poor, with no cash or assets. Those not immediately poor enough are allowed "spend-down" time to rid themselves of as many assets as are required in order to meet eligibility standards. And, of course, one must have the right doctor and the right lawyer to assist you, because the process is expensive, time-consuming and pretty complicated for the layman. I, myself, attempted to file in 2002 when I was going through an especially rough patch medically (at one point I actually flat-lined), but my application was denied: shoulda got myself a lawyer
The alternative to SSDI/Medicare is for the working poor or anyone else who does not have insurance but is not "sick" enough yet. That is the patchwork of programs described by FuzzyKen and which I'll give some more details on. Though most of the funds discussed below are Federal, they are administered by each state, which is where you're apt to find discrepancies.
The first of these programs is Medicaid, which is not Medicare, though they sound really similar. Medicaid was originally set up for kids and their mothers in the 1960s and has grown over the years into a nearly-incomprehensible and insanely complicated network of funding for all kinds of medical services for those without insurance; the actual funds are party Federal and partly State/Local.
Because of eccentricities both in the law and at each local level, some places are better to live than others who require Medicaid. The laws determining eligibility and level of service are all State-level, and within each state, there are asymmetries, with some cities and/or counties offering more comprehensive care than others.
The Ryan White CARE Act was set up in the 80s to help states cope with the extra burden HIV/AIDS imposed on their health care budgets. But because of the way tax-money is disbursed through Congress, it needs to be continuously re-approved (it's an Ear-Mark, not an Entitlement) and is only ever meant to be used as emergency funds. It is entirely Federal money but is administered on a state level based, in part, on what they request from Congress. Go-it-alone states (Utah springs immediately to mind) get very little Ryan White money to begin with and is draconian in how, when and for whom it gets used. Other states, New York and California, especially, have enormous Ryan White budgets and very different criteria by which the money is spent. In some states, like Florida, it is administered on a county level.
When AZT was first available, it was insanely expensive (anti-retrovirals still are), so ADAP (AIDS Drug Assistance Programs) was added into Ryan White specifically to cover the cost of the meds (only), though in practice both Ryan White and ADAP funds are used for things which may or may not be considered either emergency services nor strictly medications, either.
ADAP is administered separately from Ryan White (though they are effectively part of the same program) and the formularies of available medications vary drastically from state to state. Not every anti-retroviral is required by the feds to be available on every formulary, though at least one medication per class of drug is (there are, I believe, currently four classes of meds currently available, with a fifth on the way). Some ADAPs offer meds that help cope with side-effects, psych meds and pain meds, others do not.
It will probably shock most people to know that there are currently over 2300 Americans living on ADAP waiting lists, who need meds but cannot get them until someone else dies or greater funds are approved by Congress. People living with HIV/AIDS have been living on Sarah Palin's otherwise fictitious "death panels" for at least 20 years!
Since each state administers its Medicaid, RW and ADAPs differently, the criteria for eligibility varies enormously from state to state (sometimes county to county), and bear in mind that, unlike Medicare/SSDI recipients, these people are still working. Last time I checked, Federal Poverty Line (FPL) was set at just over $10,000 per year. Some states had elegibility standards as low as 150% of FPL, meaning anyone earning more than that was "too rich" to receive any benefits under RW/ADAP (sometimes even Medicaid, which doesn't pay for the meds either way); New York had the highest standard at 500%, but that's probably been changed by now.
In October 2003, when I lost my private insurance, I became intimately familiar with the public health care system in Florida. Back in Massachusetts and Connecticut (where I lived for four years between 99 and 03), RW funds covered my co-pays (which, like Scott's ran hundreds of dollars a month), they were not in Florida (even when I had insurance). The income restrictions were 300%; when I finally found a career job in Jan of 04, they didn't offer insurance, so I worked a $65,000 per year job for $30,000. When they closed that store, my unemployment was too low to cover both my rent and car payment/insurance/gas, so I lost my car, which further restricted my employment opportunities.
I've worked mostly in a bar for the last four years, after a 25+ year career selling, designing and merchandising high-end/custom furniture. The bar work is highly problematic for the administrators of RW/ADAP/Medicare in the county where I live (Broward) because it's completely unverifiable, and I'm required to provide all bank statements, leases, utility bills, pay stubs, etc every six months to determine if I'm still "poor" enough to qualify. The county clinics are day-long time wasters in hot, dirty, ugly facilities, and the county pharmacies involve three bus transfers each way, which is another day wasted.
It also goes without saying that my neurological, dermatological, GI, Mental Health and chronic pain issues are not addressed by the county at any level whatsoever.
One last thing: Once, while in a battle with my insurance company in Connecticut over whether or not a certain $850 bill had been pre-approved or not, I had my pharmacist print out the full retail cost of all my meds: AVs, GI, pain, psych, etc. The monthly cost of my medication was almost $7000, and that was in 2002.