As the COVID-19 pandemic has progressed, the public’s degree in their understanding of health literacy has proven to be absolutely crucial. Defined by the Centers for Disease Control, health literacy is “the degree to which an individual has the capacity to obtain, communicate, process, and understand basic health information and services to make appropriate health decisions.” In my previous article, I examined the practical importance of health literacy through the lens of the Patient Advocate Foundation, focusing on the issues of navigating through expensive hospital bills for COVID-19 and unprepared patients being suddenly admitted into the hospital. However, one’s sufficient understanding of health literacy cannot fix our broken health care system. As the pink book has explained, “health communication cannot compensate for inadequate health care or access to health care services or produce sustained change without the support for a larger program of change.” While the practical advice may save a few hundred dollars for those who already have stable insurance from their jobs, it’s usefulness is limited to those who already have health insurance. Those in the poorest communities that are not even able to access health care don’t have the privilege to take such shortcuts, yet these same communities continue to have the highest rates of COVID-19. Improving their health care for COVID-19 requires more reform to our current health care system, especially as the future of health care holds a plethora of possibilities for the health care industry to monopolize off of the pandemic. It is absolutely imperative that we adjust our already waning systematic approach towards changing our predatory health care system to serve the needs of people affected by COVID-19.
The NPAF, or National Patient Advocate Foundation, uses “targeted research, policy advancement, advocacy, and stakeholder partnerships” as well as patient data to influence reforms that ultimately put people at the heart of health care. While the focus on patient and family values seems like the obvious goal of health care, this is only done on an individual level. When we think of our own contact with health care, we think of our doctors and nurses, who often do have our best health interests at heart. However, on the reform level, patients are completely left in the dark. Currently, out of the top ten biggest lobbying groups, the Pharmaceutical Research and Manufacturers of America, American Hospital Association, and Blue Cross/Blue Shield hold the third, fourth, and fifth spot, and spend up to 20,707,000 million to influence health care policies for their own favor. Rather than focusing on the patients, these lobbying groups’ ultimate goal is to make the greatest profit for themselves. The consequence of such lobbying creates a greater number of administrative burdens and higher prices in our health care system, that directly translates into a pricier hospital bill for the patient. The patient input used by the NPAF and other patient advocacy groups in developing new proposals works to realign the health care policies to benefit the center of our health care system: the patients.
Each year, the NPAF outlines its policy priorities in a document with four categories: equity, access, affordability, and quality of care. Equity refers to the implementations of fairness within social policy to ensure justice for marginalized groups, access indicates whether health care services are able to be even sought after in a certain area or given one’s health care insurance, affordability refers to the cost of the care and whether the patient can afford their treatment, and quality of care refers to the treatment of the patient providing significant improvements to health. To better understand the NPAF’s original goals for reform in 2020 and how COVID-19 has interfered in their administration , I interviewed Caitlin Donovan, the NPAF and PAF spokesperson. At the onset of our conversation, Donovan clarified that each problem within our health care system comes from a combination of the four areas mentioned earlier. Clarifying the document, she explained how health care issues involve a combination of those four different issues. COVID-19 has intensified several problems within health care and, through these four areas as a guide, we can examine how health care reform can address some of these systemic issues.
As an example, Donovan pointed out the dilemma that can arise from when a vaccine will come out for COVID-19: who will get the vaccine? “There’s things everyone will agree on…providers, then people that are high risk…”, says Donovan, adding that “we can do this medically, but how about populations on a whole?” By itself, the idea that a population or a certain neighborhood should be prioritized over high-risk individuals is prone to contention. However, even within this debate of drug distribution for high-risk populations, there continues to be more issues in regards to affordability of a possible vaccine and access to pharmacies that could hold this vaccine. All of these factors are considered by the NPAF in suggesting legislation to be passed in health care reforms.
In addition to the urgency surrounding drug pricing, we must consider new issues arising due to COVID-19. Donovan specifically cited telehealth as an example. As a relatively new development in medicine, telehealth has been historically neglected when discussing what should be covered by the insurance companies. However, for patients in need of consultations with their doctors who cannot go in-person to their offices or who cannot access a doctor during these times, telehealth seems to be the only option. This is especially crucial for those with chronic diseases, who require frequent consultations with their doctors, but cannot risk contracting COVID-19. The Rare Disease Foundation has recently written legislation to ask for endorsement of the Temporary Reciprocity to Ensure Access to Treatment Act (TREAT) to allow for reciprocity of insurance plans across state borders so that these patients have the freedom to consult their doctors without the worry of cost.
While the importance of telehealth is more pressing in the cases of chronic illnesses, its application towards an array of medical purposes has led to multiple groups to advocate for its expansion to services like outpatient visits and group visits, revealing the importance in patients accessing medical services.
The examples that Donovan emphasized during our talk–vaccines and telehealth–are only two examples of the issues that COVID-19 has shed light on. However, the legislation that we talked about is only a small part of the picture for these two issues. Furthermore, these two issues are another minor part of the seemingly never-ending list of health care issues centered around COVID-19: racial disparities, hospital infrastructure, insurance for the increasingly unemployed, etc. Because it seems impossible for us to slowly attempt to fix these issues one by one, the main issue may lie with the basis of the health care industry, requiring patient advocacy foundations to call for reform. However, our spiraling health care system in the midst of a pandemic places a dilemma over one’s action towards the health care problem: we are almost completely uncertain as to what will happen next yet we continue to cringe as we see our poor health care system unravel with a greater number of cases each day. My last question for Ms. Donovan was about how to deal with this dilemma: “How can a normal citizen find a way to call for reform to our health care system?”
In the private sector, “volunteering for patient advocate groups and keeping up with the news from patient advocates is a great way to get involved,” mentioned Donovan. Because patient advocate groups often call for legislation, she encouraged that people do this on an individual level through policy change.
Ultimately, it is possible to create change on all three levels of government: local, state, and national. On the local level, Donovan recommended those looking to create change for health care policies to find other groups with the same interests and then holding meetings with local officials with them over Zoom, or if possible, in person.
Then, in regards to state and national legislation, she likened participation in advocacy to the meme of a man holding hands with his girlfriend, while looking at another girl walking by, she compared the girlfriend to state politics and the other girl to national politics, pointing out how people often ignore state politics despite its importance.
In explaining what state governments due for health care reform, she mentioned that “in terms of systemic reform, states can regulate Medicaid expansion and benefits, which often takes up a large portion of a state’s budget”, adding that “federal requirements for Medicaid are often so difficult to reach that those close to poverty can’t acquire it and state funding provides a more expansive list of benefits.” For states, while it varies, there is usually a website that shows the health care legislation that local legislators support, and for the national level she recommended utilizing Congress.gov and press releases to see what legislators have been focusing on, so that you can address your concerns to them via letter or phone call. Taking legislative action doesn’t have to be large; doing something as small as voting for the officials whose platform involves Medicaid expansion is already a small step in calling for more attention to the reform needed for the health care industry. Through these legislative efforts, we can ultimately follow in the footsteps of patient advocacy groups, taking back our own rights as a patient in the health care industry rather than letting large lobbying groups dictate them.
Edited by Blair Hoeting
3 thoughts on “Calling for Health Care Reform through Patient Advocacy”
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