Medical Debt is a Severe Financial Burden in the United States

By: Ranier Simons, ADAP Blog Guest Contributor

Medical debt is a major financial crisis in the United States. It is a major barrier to financial health and even physical health. Studies show that medical debt is negatively correlated with health issues. People who have problems paying their medical bills have a shorter life expectancy, poorer mental health, health issues like hypertension, and lower self-reported health status.[1] 

Photo Source: The Sycamore Institute

Even though over 90 percent of the U.S population has some semblance of health insurance, medical debt is still a pervasive and debilitating issue.[2] Present-day medical insurance plans have many cost-sharing requirements that saddle patients with bills they cannot pay. With high monthly premiums, these requirements, such as high deductibles and co-payments, result in bad life decisions. People face juggling basic needs such as food, clothing, and housing with paying medical bills generated by necessary care. Moreover, people borrow from family or even financial institutions, going into even further debt to take care of their medical bills.

The Kaiser Family Foundation published a brief shining light on the burden of medical debt in the United States. The overall finding was that the burden of medical debt is stratified along racial and economic lines, age cohorts, strength of insurance coverage, and health status. The data source was the Survey of Income and Program Participation (SIPP). Significant medical debt was defined as people who owed more than $250 in unpaid medical bills as of December 2019.[2]  The survey shows that people in the United States owe, at the minimum, approximately $195 billion in medical debt. Roughly six percent of adults have over $1,000 in medical debt, and one percent (about 3 million people) owe over $10,000.[2]

Photo Source: KFF

Along racial lines, African-Americans are reported to be more likely to have significant medical debt. Of the 9 percent of adults surveyed who meet the study threshold of high debt, 16 percent of those are non-Hispanic African-American. This contrasts to 9 percent of non-Hispanic White Americans and 4 percent of non-Hispanic Asian-Americans. Regarding gender, more women report having high medical debt than men; 11 percent and 8 percent, respectively. Part of this discrepancy could be attributed to women having lower incomes and increased healthcare expenditures associated with childbirth.

Unsurprisingly, older adults are more likely to have significant medical debt than younger people. However, there is a distinction apparent among those later in life. The report shows that the percentages decrease when older adults reach Medicare age. Twelve percent of adults aged 50-64 report significant medical debt, in contrast to 6 percent of those aged 65-79.[2] 

In terms of income, those with lower or moderate incomes are more likely to have high medical debt. Twelve percent of adults with incomes below 400% of the federal poverty level have such debt. Income is essential because some do not have liquid assets to pay out of pocket maximums, deductibles, and co-insurances, even with insurance. Sixteen percent of adults stated they would need to take on credit card debt to meet an unexpected $400 expense.[2] Four hundred dollars could easily be an emergency room visit co-pay for a privately insured person or even an urgent care visit for someone who was not insured.

Health status in combination with income is another relationship leading to medical debt. Those with more medical issues, by definition, have more medical expenditures due to chronic health maintenance needs, and higher utilization of services generates more bills that accumulate over time. Those with more serious medical issues cannot earn as much income being hindered physically by their medical problems in both ability and maintaining consistent employment.

Geography was also shown to be a factor by the report. People living in rural states in the South reported as being 12% of those reporting high medical debt, as opposed to 10% in the Midwest, 6% in the West, and 8% in the northeast. Related to this geographical distribution is Medicaid. Twelve states that have not expanded Medicaid under the Affordable Care Act are Alabama, Florida, Georgia, Kansas, Mississippi, North Carolina, South Carolina, South Dakota, Tennessee, Texas, Wisconsin, and Wyoming.[3]

The KFF report is proof that expanding coverage is not a panacea to alleviating the financial burden associated with medical debt. Effective change will come with restructuring healthcare finance, socioeconomic infrastructure, wholistic population needs assessment, and re-examining the country’s value system.

[1] Pellegrin, M. (2021, May 19). How medical debt affects health. Retrieved from https://www.sycamoreinstitutetn.org/how-medical-debt-affects-health/
[2] Rae, M., Claxton, G., Amin, K., Wager, E., Ortaliza, J., & Cox, Cynthia. (2022, March 10). The burden of medical debt in the United States. Retrieved from https://www.healthsystemtracker.org/brief/the-burden-of-medical-debt-in-the-united-states/
[3] Holahan, J., Buettgens, M., Banthin, J., & Simpson,M. (2021, June 30). Filling in the gap in states that have not expanded Medicaid eligibility. Retrieved from https://www.commonwealthfund.org/publications/issue-briefs/2021/jun/filling-gap-states-not-expanded-medicaid

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Can The HIV Community Beat President Trump?

Guest Blog By: Josh Robbins, imstilljosh.com

Reprinted with Permission from Josh Robbins, imstilljosh.com

How to continue to survive Trump if you are living with HIV

Photo Source: imstilljosh.com

The Trump Administration is weirdly disinterested in the HIV epidemic in the US. And that’s the biggest understatement that I have ever written. 

President Trump fired the remaining members of the Presidential HIV Council one year ago. The Office of National AIDS Policy has been empty since the beginning of his administration. (I called the day Trump was inaugurated to see if the office was still open and I left a voicemail. I have not received a return call. Shocker!?!?)

Money intended for funding the US fight against the epidemic at home and internationally has been chipped away and it appears that HHS is just trying to be quiet about it all—almost fly under the radar. Who can blame them? They are probably doing the best thing at the moment, honestly.

I inquired to HHS about PACHA (Presidential Advisory Council on HIV/AIDS) and the status of Kaye Hayes.

Here were my questions: 

• Is Kaye Hayes still the executive director of PACHA?
• How many members are currently on PACHA? Who are they?
• What is the current status of PACHA?
• When was the last time that PACHA provided guidance or input to the administration? Can I receive a copy of that?
• When is the next planned meeting?
• And if no members are currently on the council, is there any guidance being given to the current administration? If so, by whom?

Here’s the official response by the HHS spokesperson: 

Photo Soure: imstilljosh.com

I interpret this as no news. And silence. Not good!

This Is Not Going Well

When you think about the administration’s ‘less than friendly’ welcoming of immigrants and those seeking asylum in the U.S., or those visiting from other countries and remembering the nightmare Trump has put many through by changing travel rules and instituting immediate travel bans—it’s just so damn overwhelming. Honestly, I can’t even remember all the bad stuff.

Here’s the real tea about it: It’s only been two years! Can we all make it two more years?

YES! Yes, we can. And we will.

When Trump became President, I wrote about the best ways for us all to survive. Other popular websites in the HIV space called it the Trump-apocalypse.

Read: 10 Ways To Survive A Trump Administration

So, how we continue to survive this administration?

1. We are not the victims. We are must never view our advocacy as such. We are strong, healthy, and marginalized. But we will survive!
2. We must engage the administration at every opportunity—not just complain. We were caught off our game when he was elected. We better prepare better for the 2020 election. 
3. We must have a message of hope, based in science and demonstrate what we are advocating for—to live well. #UequalsU
4. We still need to support national ASOs and organizations like ADAP Advocacy Association. 
5. We need some of our leadership to change. We must identify new leadership to be our community voices. And we must stop allowing a small caucus to say they speak for us when they have missed the boat largely with U=U. 
6. We must lean on each other when we need it. Sean McKenna calls it a buddy program. Get a buddy!!! 
7. We must recognize disparities and work together to end them… and we must make room at the table for others who have been silenced or ignored. But we must not allow this to drive wedges within our community. We need to work together as one unit! 
8. We need to ask for personal help when we need it. We are advocates and many are long term survivors. But we must allow our pride to disappear when we need help.

It has been a hell of two years, but it’s been a hell of an epidemic and we are going to make it!

I love you all!

Let’s do this!!!

[Check out the original blog post by Josh Robbins online at imstilljosh.com]



Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

BIO's 2018 Patient & Health Advocacy Summit

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ADAP Advocacy Association has long prided itself on building advocacy partnerships, and thus it is fitting that our organization's leadership — including board members Wanda Brendle-Moss and Jen Laws, as well as myself — was invited to attend the Biotechnology Innovation Organization's (BIO) 2018 Patient & Health Advocacy Summit in Washington, DC. What makes the annual event useful is it assembles the advocacy community, industry partners, regulators, academia, students, and of course, patients.

Susan Stein, MPH, who serves as CEO of the E4 Health Group, shared a simple, yet powerful characterization: "Partnerships between patient advocacy organizations and industry are more important than ever."

Photo Source: FierceAdvocate

The BIO 2018 Patient & Health Advocacy Summit brought together over 200 key stakeholders for two days of programming to discuss current policy issues, share best practices, and exchange ideas. Nearly two-thirds of the attendees represented the patient advocacy community. The BIO Summit also provided an invaluable opportunity to advance partnership among stakeholders in the healthcare ecosystem. Whereas the ADAP Advocacy Association's participation represented HIV/AIDS, there were many other disease groups in attendance, such as Psoriasis, Arthritis, Muscular Dystrophy, Metachromatic Leukodystrophy, and many more.

The BIO Summit immediately addressed the 800 pound gorilla in the healthcare ecosystem with an important pre-summit workshop on best practices for engaging with industry. As the patient perspective plays a more central role in the drug development process, it is recognized that clearer conflict-of-interest policies and best practices would better serve all stakeholders. The patient voice has moved beyond simply participating in clinical trials, and as a result industry and regulators are engaging patients earlier in the process. The 21st Century Cures Act includes a commitment to patient-focused drug development ("PFDD"). It amends the Federal Food, Drug, and Cosmetic Act to require the Food & Drug Administration to establish processes under which patient experience data may be considered in the risk-benefit assessment of a new drug.

The timing of the BIO Summit couldn't have been planned any better with the Trump Administration's latest announcement under its blueprint for prescription drug reform. The latest proposal would set up an international pricing index in an effort to drive down prescription drug costs under Medicare Part B, which in turn, could also drive down patient out-of-pocket costs. The U.S. Department of Health & Human Services ("HHS") Secretary Alex Azar discussed the "pro patient access proposal" at the BIO Summit, only hours after it was announced.

HHS's decision to announce an Advance Notice of Proposed Rulemaking ("ANPRM") translates into the patient advocacy community having ample time to weigh-in on it. It could very well be the case that the public comment period represents one of the times where the patient advocacy community and industry view things differently, but that is a good thing.

For a policy brief on the ANPRM, please visit: https://www.hhs.gov/about/leadership/secretary/priorities/drug-prices/ipi-policy-brief/index.html.

For a fact sheet on the ANRPM, please visit: https://www.cms.gov/newsroom/fact-sheets/anprm-international-pricing-index-model-medicare-part-b-drugs.

Comments on the ANPRM will be accepted until December 31, 2018 and may be submitted electronically through the CMS e-Regulation website at: https://www.cms.gov/Regulations-and-Guidance/Regulations-and-Policies/eRulemaking/index.html?redirect=/eRulemaking.

The ANPRM can be downloaded at: https://www.cms.gov/sites/drupal/files/2018-10/10-25-2018%20CMS-5528-ANPRM.PDF.

Drug Importation Policy is a Hard Pill to Swallow

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

When I first heard the news that Congress was considering legislation that would allow prescription drugs to be imported from abroad, I was honestly quite shocked. I know firsthand how such policy can negatively impact consumers who decide to purchase drugs from abroad. The potential consequences are quite daunting.

In 2002 (just shy of my 30th birthday), I was diagnosed with HIV. When my doctor told me the news, a hundred questions came to mind all at once. What was my long-term prognosis? What types of medications would I have to take? Who could I turn to with my questions about life with HIV?

(Editor's Note: The photo of me was taken in 2002 on Easter Sunday during the time that I was importing my HIV medications. At the time, I was still quite sick after experiencing my acute seroconversion. In fact, in this photo my two best friends are literally helping me stand up, and they made me look "presentable" with some make-up. The benefits of rooming with two wonderful women who took care of me.)

What happened next directly shaped my viewpoint of the dangers associated with importation.

I ordered medications from an online Canadian pharmacy. To this day, I have no way of knowing where the drugs were made or if they contained the active ingredients I needed to effectively treat my condition.

At the time, I opted not to consult my physician in the process. Due to my insurance coverage, my out-of-pocket cost was $1,300 during the second month of treatment. For two months, I received medications via mail from Canada. Honestly, I didn’t even entertain the idea of whether the medicines were real or fake.

Fortunately, my doctor intervened and advised me of the reality of what I was doing. She told me that drugs purchased through online channels are often counterfeit and most likely do not contain any ingredients that help patients. In many cases, the ingredients can be deadly. Without even knowing it, I was rolling the dice with my health and safety. It was an eye opening intervention and one that too few patients ever experience before irreparable damage has been done.

Without question, we need to address the issue of rising health care costs in the United States, which greatly contributes to patients buying medicines online. However, legalizing importation isn’t the solution we need. It will undoubtedly lead more patients to risk their health and, ultimately, their lives through online drug purchases.

Consider the following: The World Health Organization estimates that 10 percent of medicines across the world are fake. In some parts of the world, this number is as high as 30 percent. In 2015, Interpol confiscated nearly 21 million fake medicines, a significant increase over the previous year.

As a society, why would we take our guard down when the threat is so high? As someone who is informed on health care issues (even at the time of my diagnosis), my search for Canadian pharmacies did little to warn me against the dangers. I had little knowledge or available information when I ordered medications from Canada.

Rather than open the floodgates to unregulated medicines, we should be doing more to ensure the safety and integrity of our drug supply. Last month, former FBI Director Louis Freeh released a report highlighting the incentives that drug importation would create for criminals who are actively marketing to consumers in the U.S. and the burden it would place on law enforcement who protect our drug supply.

Among his recommendations to be proactive on the issue, Mr. Freeh urges policymakers to conduct a detailed assessment of law enforcement’s readiness and ability to get in front of the threat that exists. I completely agree with Mr. Freeh - this should be our focus.

As we strengthen our defenses, we must also prioritize patient education and engagement initiatives to ensure that we’re deterring importation from the moment of diagnosis. The reality is that a number of online pharmacies with a Canadian flag attached to them are merely front doors for smugglers operating in countries across the globe.

There are viable ideas to combat the rising cost of healthcare – including prescription medications – but importation is not one of them.

Over the past two decades, we’ve made significant progress against HIV/AIDS. Today, there are medications available that we didn’t have just a few years ago. In fact, recent studies have shown that people in North America and Europe who are infected with HIV and who begin treatment with a triple-drug cocktail can expect to live nearly as long as people who aren’t infected by the virus.

Having lived with HIV for nearly 15 years, I know how important medicine is in achieving a sense of normalcy again. If we embrace drug importation, we’re sending a signal to patients across the country that their health and safety don’t matter. Lawmakers should not be playing a game of chance when patient lives hang in the balance.

This opinion piece was also published in the August 11th edition of the Washington Blade.