HIV/AIDS Patients Struggle with High Healthcare Costs

January 21, 2016 - The high costs within the healthcare industry are often associated with managing the health of patients living with chronic medical conditions. At the J.P. Morgan’s Healthcare Conference in early January, James L. Madara, the Executive Vice President of the American Medical Association, provided his opinion on how chronic medical conditions have been a major driver of healthcare costs around the nation.

“I have to say, when one thinks of the evolving healthcare market, technology, digital revolution, biomedical advances, and precision medicine are some of the things that come to mind, but we sometimes lose track that the overarching driver that will dictate the direction of innovation is the shifting nature of disease burden itself,” Madara said at the conference.

“This driver, as many of you know, has radically changed. I have to say, it’s changed in a way that’s kind of crept up on us. It’s changed from acute disease to chronic disease, but much of our healthcare structure is still tilted toward this old paradigm of acute disease.”

“The CDC estimates that more than 80 percent of our three trillion dollar annual healthcare spending is related to chronic disease. So currently, when we talk about chronic disease, we’re talking about 2.5 trillion dollars.”

“Science also indicates that we’ll probably have more and more chronic disease. We’re less good at cures than we would like to be, but not bad at taking previously acute, fatal disease and converting it to a chronic, manageable condition.”

To hear more about how chronic medical conditions – in particular HIV and AIDS – is driving healthcare costs and posing financial obstacles for those living with the disease, HealthPayerIntelligence.com spoke with Michael Kaplan, President and CEO of AIDS United.

AIDS United has joined its efforts with Partners for Better Care, which aims to reduce healthcare costs and make medical care more affordable and accessible for American citizens. When asked why AIDS United chose to join the Partners for Better Care organization, Kaplan answered, “The quick answer is due to a perfect alignment of interest.”

High healthcare costs: Few HIV cases receive proper treatment

“To go into more detail and a little background, I’ve been living with HIV since 1992 and working in this field and we have seen an immense amount of progress particularly in the last five years. We now are in a place of understanding, whether you ask the NIH or the CDC, we have all the tools to end the HIV epidemic. It’s possible but the challenge is getting there,” he continued.

“The challenge is that while we know today that treatment can extend the life of a person infected to almost that of the uninfected and we know today that a person on treatment and virally-suppressed is almost impossible to transmit HIV to another person, the reality today in the US is that less than one-third of the 1.2 million Americans living with HIV are on treatment and virally-suppressed,” Kaplan explained.

“All of that has to do with access issues. It has to do with affordability, transparency and everything from dignified and culturally-competent care to knowing what drugs are covered in the formulary. I will mention that the perfect alignment of interest is why we got involved with Partners for Better Care.”

The financial impediments affecting AIDS/HIV patients

When asked to describe some financial and insurance-based challenges that affect people living with AIDS and HIV, Kaplan responded, “Historically with the epidemic, we spent in the United States for about a decade or two dealing with insurance companies pushing most people living with HIV off of private insurance.”

“Up until 2014, the only way a person with HIV could be ensured is either an employer-based plan or, if you were unemployed, hope that you were impoverished enough to qualify for Medicaid,” he clarified. “Now with the new health reforms and the Affordable Care Act, clearly, health plans can no longer discriminate based on pre-existing conditions, but we still have some behavioral problems happening on the part of the insurance industry.”

“While the Affordable Care Act guarantees me the right to now get insurance in a full market whether or not employed and while my HIV status is at poverty, I don’t have to have AIDS to get Medicaid, I can simply get it because I’m impoverished.”

“The challenges that are existing now are a few. One is we’ve seen through the exchanges a real lack of transparency meaning that the network of providers are often not only inadequate but inadequately documented. You don’t know if you really have the providers you need if you purchased an insurance plan.”

“We actually see that even more so through the formularies for drugs. This year got better but in the first year of buying plans on the exchange, if you were trying to figure out if your treatments were covered, good luck!” Kaplan exclaimed.

“I like to think I’m fairly educated. I’ve run nonprofits for a long time and I’ve led organizations – I spent an hour and a half the first year of the exchanges with a representative from one of the health plans and she couldn’t figure out if my HIV drugs were covered or not,” he claimed. “If the insurance providers can’t, thinking that beneficiaries can is a joke.”

“We’re getting better on the transparency of formularies but it’s not where it needs to be. The other issue that happened is that in most states, HIV drugs have been moved up to specialty tiers. In many states, this also means a higher co-pay or a higher coinsurance than many people experienced before.”

“We have seen some successful winds. For example, in Florida, there was threat of legal action that got the insurers to move some of the HIV drugs – particularly those that were not as new – off of the specialty tiers. But we’re still seeing in the bulk of states, the bulk of HIV medicines being placed on the highest tier with the highest co-pay and the highest co-insurance.”

“Many people who used to have access to treatment through drug purchase programs under Ryan White have been moved into private insurance plans and, all of a sudden, found out they had even bigger expenditures than they ever expected,” he positioned.

“Again, the transparency of formularies and the treatment of HIV drugs and Hepatitis drugs are some of the financial challenges that many are experiencing,” Kaplan explained. “The other financial challenge, quite frankly, is that in the US we have very different HIV epidemics depending where you live. In Massachusetts, New York, and California, we have seen a gradual decrease in new infections. In Louisiana, Texas, and many of the southern states, we’re seeing a continued increase.”

“Yet, where HIV aligns with poverty, it is the states where many are having the greatest increases that refuse to do Medicaid expansion for their poorest citizens and, so, that financial factor comes in as well,” Kaplan concludes.

Solutions health payers could take

When asked what steps health payers should take to improve transparency, health literacy and educate consumers on their health plan coverage options, Kaplan mentioned, “I would say that the most important part is engaging in a dialogue. I remember not too long ago, there was a new head of Pharma and payers were creating a dialogue.”

“The one thing missing was the patient voice,” he relayed. “While health payers are engaging with Pharma, there needs to be a 3-way dialogue. It should not be just the providers and payment process reps like private insurers but the 3rd voice needs to be the patient and consumers who tend get the short end of the stick.”

“The other part of the solution is purely about due diligence and making documentation clear including what’s in a formulary and who’s in the plan’s provider network,” he stated.

Federal regulations for minimizing out-of-pocket healthcare costs

In reference to a question about any regulations the federal government could adopt to minimize the patient costs of prescription drugs and other out-of-pocket expenses, Kaplan responded, “There has been legislation and policy introduced in several states that have put a cap on co-pays and coinsurance. Bravo for those states but this is not a national solution.”

“It really is luck of the draw for the states,” he continued. “There has not been adequate legislation introduced and whatever has been introduced hasn’t passed in the federal government.”

“There needs to be a stronger enforcement of nondiscriminatory policies found within the Affordable Care Act,” Kaplan mentioned. “There should be no discrimination among the diseased. The other broader area is that the Obama administration should allow states that haven’t expanded Medicaid to allow even those states to get the three full years of full Medicaid expansion if they choose to pursue the funding in the future.”

The Ryan White HIV/AIDS program

When asked about his perspective on the Ryan White HIV/AIDS program and how it has helped people living with the disease, Kaplan answered, “The Ryan White Care Program started in the 1990s because private insurance pushed people off of their plans.”

“Healthcare providers also refused to take care of us," he continued. “It may have been due to fear or homophobia. Doctors were terrified of people living with HIV. The Ryan White Care program is now at about $2.6 billion. Historically, up until 2014, there really were few other choices for poor people to get HIV treatment.”

“The AIDS drug assistance program helps provide $800 to $900 million to ensure people can afford HIV drugs. Recently, we’ve been able to successfully move people off of this program onto Medicaid or help them buy insurance through the exchange. It’s vital to provide comprehensive care.”

“The Ryan White program continues to be critical for several reasons,” he clarified. “It covers supportive services to help people remain engaged and in treatment. Some top barriers of ensuring HIV treatment is lack of transportation, stable housing, and lack of providers. However, all of these issues are tackled through the Ryan White program.”

“In states that haven’t expanded their Medicaid programs, the Ryan White program helps purchase insurance for low-income people living with HIV or AIDS,” he mentioned. “The best study area is to pair the Ryan White program with health reform. Massachusetts did its own version of health reform earlier on and is seeing better results for patients with AIDS. Massachusetts saw a steep decrease in new infections than in any other state.”

“It’s beneficial to repair the Ryan White program to supplement health reform,” he concluded. “The dream is to move all states to full health reform and pair it with the Ryan White program.”