I have been HIV+ for nearly 10 years. Fortunately I live in a time when medications are advanced enough to significantly prolong lifespan and stabilize day to day health. Just a few years ago the best option was so toxic to my system I could barely function. Today my medications are far less intrusive.
My medications are also incredibly expensive.
- Truvada - $2,765.05
- Tivicay - $2,683.15
My monthly medication cost is $5,448.20 which results in $65,000 a year. The nature of HIV requires a daily routine. Missing days at a time can cause the medication to become ineffective. For an HIV+ individual, not having medication means significantly risking future treatment options.
I have health coverage through my employer which provides a $25.00 copay for specialty medications. My insurance company pays the rest for each every month. This is positive, but came close to being a major concern when a budget crisis in my state nearly caused specialty medications to have a 30% coinsurance and an added $500 to my deductible. This would have made my individual responsibility $1,634.00 a month. My annual income is less than $25,000.
But realistically even if I made $50,000 a year that would be 40% of my monthly income.
My HIV doctors rely on the Ryan White CARE Act for most patients, which is designed to assist with the high costs of medication and medical services. The Ryan White CARE Act was enacted in 1990 and is the largest federally funded program for helping people with HIV/AIDS. People with low income or no income can also qualify for Medicaid which will cover these costs.
A 2014 Buzzfeed article titled: Why HIV Drug Costs Are Spiking Under Obamacare observes:
“Since the start of this year, many people with HIV have experienced steep increases in the costs of their antiretroviral medications. This isn’t just price-gouging, some public health advocates say — arguing it’s also a blatant attempt to discriminate against patients who need expensive treatments. The goal, according to these advocates, is to force people with HIV to choose other health plans or force their doctors to prescribe less expensive, and perhaps less effective, medications.”
A 2015 article on HIVequal.org titled Priced Out of HIV Treatment: How Insurance Companies Keep HIV-Positive Patients Away argued:
“Health insurance companies group their covered drugs into tiers based on the cost of the drug and the availability of over-the-counter alternatives. Tiered pricing gives financial incentives so patients will choose lower-cost drugs. But evidence exists that some shrewd insurers have taken the practice to a level that may skirt antidiscrimination laws.”
One aspect of the Affordable Care Act eliminated discrimination towards pre-existing conditions. Through the apparent security we also find a great deal of anxiety as even with guaranteed federally funded programs for lower income HIV+ individuals, many still fear being denied access to the healthcare they need.
From the liberal perspective, HIV+ people need treatment and therefore deserve treatment. It is vital for the government to intervene to make access less expensive if not free. This requires regulation and legal standards. From the same article above: “Coventry and Humana recently reduced the prices of some HIV drugs in Florida after nonprofit organizations filed a complaint with the U.S. Department of Health and Human Services. But in Florida, unlike Illinois, a state law regulates insurance coverage for people with HIV and AIDS.”
The article advises: “And if you suspect that your insurer is engaging in adverse tiering, contact your state department of insurance or a local HIV/AIDS advocacy group for help.”
Conservatives, however, typically prefer free markets to determine the price of a product or service and argue that government intervention only complicates the matter. While on the surface it appears to provide access, behind the scenes it allows monopoly and endless price increases deferred to the citizen in other ways. Capitalism will always encourage the most profit for the least cost. This creates fierce competition in popular markets which inevitably drives prices down while maintaining a choice in quality.
But how does this work with vital medications? Here is where the line becomes blurry. An insurance company is not designed to help people get the care they want or need. The purpose of the company is to negotiate between a business and a customer for a fee. We often forget that healthcare is essentially a business and we are essentially customers. Healthcare is emotional because of its impact, but we are still paying someone else for a product or service.
As the two articles above imply, regulations create ever more clever ways of attaining the same goal. It makes sense to pursue healthier customers who will pay for your service but not require you to continuously pay for the far more expensive medical costs they incur. As you can see from my case, I pay $25 for a medication my insurance company pays over $2,500 for.
Unlike many medications across the board that have entered the world of generics thanks to patent expiration dates, often older HIV medications only become generic after they have lost their effectiveness or have been deemed obsolete. As described by Tim Horn, HIV project director at TAG, in 2014: “Really, there are two lessons here. No. 1, which is in developing strategies for the arrival of generic antiretrovirals in the U.S., patent is a bit frustrating; and, two, the ability of attorneys to prolong name-brand patents is both amazing and outrageous.”
In that article he also goes on to discuss the positive news that as HIV medications improve, their expiration dates are coinciding more with their usefulness and costs may drop in the future.
A primary concern is that considering efforts to protect name brand medications, insurance companies have no choice but to pay the higher rates and high rates inevitably cause higher premiums, deductibles and copays. It is not necessarily an issue of morality as it is one of basic cost. Higher costs mean more reliance on federal programs and federal programs rely on taxes. In order to qualify for the federal programs you must be under a certain income level meaning it becomes preferable to be lower on the income scale if you are HIV+.
People who make less per month cannot afford higher premiums. High deductibles make using insurance impracticable. Everyone is required to purchase health insurance, however, or be covered by Medicaid. More people on Medicaid means more taxation to support it. And on and on it goes.
The result is my medication can cost $2,500 a month or $5,500 a month as long as federal programs pay for it. There is no connection between the customer and the provider. I cannot simply choose a similar medication at a better cost. I am also dependent on those federal program meaning shifts in politics or the economy can have a larger impact. While many argue this means HIV+ people should support those that support HIV/AIDS federal programs, I wonder why we aren’t asking why HIV medications aren’t available at better costs and choice. For that matter, why do we rely on lawmakers to impose limitations on private companies making a highly desired product?
Unfortunately as the ACA creates less and less competition and options, and insurance companies are forced to raise rates, copays and deductibles to keep up with highly demanding medical costs, the ability to independently manage my own care becomes less of a possibility. Am I stuck with the choice of limiting my financial success in order to afford medication I currently need to survive?
A look at state insurance for public employees does not provide a brighter perspective towards government control of all health coverage either. For example, before a last minute budget deal in late June of this year, my state had a severe crisis in how health coverage for state employees would be funded. Had the budget not passed, hundreds would have been furloughed or laid off as well. The infighting between parties nearly made me face the reality of having insurance I could no longer afford to use or losing my job altogether. There is no guarantee next year won’t be exactly the same.
Ideally medical care would be similar to purchasing any other service. Medication would be like purchasing any other product. Some products cost more due to complexity and the work involved in making them and HIV medications are cutting edge. It is vital to continue producing high quality product and that requires motivated scientists. Motivated scientists need to be paid well for their work.
The conservative argument, which I agree with, is that more government intervention will inevitably lead to tighter budgets and those brilliant scientists will be paid less to do more work creating less quality of a product that can be made ever more cheaply. As it stands today, I am dependent on these medications for life. What happens in 10 years matters a great deal.
So what is the solution? We have seen a partial look at both sides. Before the ACA and other regulations, insurance companies could cover what they pleased and discriminate based on conditions they felt would be too expensive to cover. Before federal programs HIV+ individuals were faced with expensive medical bills and medications with no way to pay them. Today everyone with HIV can obtain needed care and medications as long as they are under a certain income level, but their dependence on this system becomes stronger with every year. The incredible fluctuation in politics and the economy should make anyone dependent on government services insecure.
Do we limit the profit potential of drug makers by forcing them to open up their formulas to anyone who wishes to compete with them? Should we force insurance companies to offer less expensive coverage for ever-growing medical costs? Do we assume the government will be there to pay for it if we can’t?
In the end I am not sure of the solution, but I do know that my conservative instincts tell me I am in a precarious position and I am only a month away at any given time from losing access to the miracle drugs that keep me healthy and alive. And currently, there is nothing I can do about it.