Episode 89 Recap – Putting Patients back at the center (with Lou Tharp)
The Print Version of Episode 89 of the FLATLINING Podcast
In this episode, Matthew and Ron talk with Lou Tharp, Executive Director of the Global Healthy Living Foundation. A worldwide non-profit patient advocacy organization that focuses on educating and providing tools to help people with lifelong chronic illnesses. The Global Healthy Living Foundation is the parent organization of CreakyJoints, an international digital community for millions of arthritis patients and caregivers of those with arthritis.
Lou Tharp ran a successful public relations, advertising, and marketing company for twenty years, worked for several large national and international public relations companies, and worked in the tech sector throughout the 90s. He became a social entrepreneur in 1999 and founded CreakyJoints with his own funds to service people with arthritis. In 2007 he co-founded the Global Healthy Living Foundation. He served in the Indiana National Guard from 1972-1978, was the first openly gay coach at the U.S. Military Academy, served as the swim coach for the Triathlon team, and is currently the head coach of the triathlon team at Columbia University. In the Obama Administration, he was a member of the Army Education Advisory Committee and is a current member of this committee in the Biden Administration.
Matthew starts the conversation by asking Lou how he got involved in patient advocacy. Lou shared a story about how he met Seth Ginsberg a young man of about sixteen. Seth suffered from spinal arthropathy since he was thirteen years old and was a national spokesperson for the Arthritis Foundation. Lou learned his story, recognized his drive, and hired him as an intern. He explained that he was not in healthcare then, but was working with tech companies helping them market and sell their products. He said in short order Seth was teaching clients with expertise. While in college Seth suffered a flare-up. Lou said this motivated Seth to take Arthritis advocacy in a new direction, a kind of generational shift. With websites and digital marketing being Lou’s forte’ they started CreakyJoints. He said Seth became very focused, and since he was attending an entrepreneurial college, he was able to incorporate CreakyJoints into much of his schoolwork. Lou explained that this is the only job Seth has had and he serves as the president of the Global Healthy Living Foundation. Despite their generational gap, they have worked together very well over the last decade and a half.
Lou said working with Seth at the Global Healthy Living Foundation is the longest job he has ever had but he said it is an enriching environment, “The fact that we help patients every day, is big big plus, we are focused on research and support, policy, education, and advocacy. We try to create that home for patients.” Lou said that Seth’s work internationally allows him to meet others with whom they can coalesce ideas, to benefit healthcare.
Noting his wide range of positions, Matthew asked Lou about his drive to serve others. Lou described their organizational culture as one that is dedicated to helping others and that aspect draws real talent to their team. With around 30 employees in the U.S. and more internationally, he said that many on the team could make more money working for larger entities but are drawn by the high degree of satisfaction that comes from helping others. He said at their core, they were founded to help those with chronic illnesses understand that their disease is not their identity, and the Global Healthy Living Foundation was set up to help them. Their other focus is those underserved communities, those in the minority, indigenous or LGBT communities. Lou said, “These are folks who have traditionally been forgotten by your basic white guy healthcare system.” he said. Explaining that you don’t have to look too far in these communities to find the issues that prevent them from living a normal or semi-normal life. He said that they try to give patients the agency to organize their lives so they can do that.
Lou pointed out that one of the best things coming from the pandemic for those with chronic illness was remote working. Noting it gives people with these diseases the ability to control their time and their environment while still being a productive employee. In short, he said, it allows them to maximize their quality time. He explained how their organization models these arrangements with over half of their employees having a chronic illness or on some type of biologic he said. The benefit is when patients see what they are doing, they understand that they can also organize their life in this way. The other benefit to these patients from the pandemic was telehealth, he said. Admitting that not everyone is a fan, but when you have patients with mobility issues, or live hours away from a treatment facility there is a lot that can be done through Telehealth saving time and money and often a large obstacle to care.
Matthew asked Lou if government or corporate policy is the way to establish these kinds of policies for those with chronic diseases. Lou explained that there is proof of positive outcomes from government control of healthcare and pointed to several indicators where the American Healthcare system lags behind. “If governments can set the terms of healthcare, then population health improves, and you see it in the numbers.” he said. Lou said that America has set itself on a capitalist path for healthcare and in his mind healthcare is a socialist product. He goes on to explain with a comparison of the “regulated monopoly era”. Describing his employment experiences at ATT&T in the early 70s, as well as water and power utilities. He stated that these were thought of as “national resources.” He said when he was at AT&T, their objective was that everyone in America would have high-quality phone service. He said there were people in rural Indiana who paid something like a dollar a month for phone service. The point, he said of this comparison is that the healthcare system could work best if there is a fair amount of government intervention. He quickly noted there are downsides to this approach, admitting there are drugs you can’t get in the United Kingdom because they can’t afford them. He also said there are situations where government-run hospitals are not equal to U.S. hospitals, “but the issue with America is that it is taking into account the relative wealth of the patient. If you are rich in America you get good healthcare.”
Ron thanked Lou for his insights, noting he had not heard the situation explained in just that way, and went on to note that one of the frustrating things for him is when the level of care is dictated by the type of insurance card the patient is carrying. He said, “The determination of what is medically appropriate for that patient can be largely driven by who the payer is.” Ron said that the U.S. is likely a ways off if ever modeling Europe’s healthcare system, but asked Lou if there were opportunities for some government involvement in the right way that would benefit patients. Lou responded with a look at Medicaid and thinks the pathway to fairness is through this benefit. He stated that Medicaid is a system that works, but depending on where you are it might work better in one location than another in general. Lou said Medicaid as a system does set some prices that ensure care is the same regardless of where you go.
He went on to describe a set of free clinics they operate in south Florida that successfully works with physicians to volunteer their time and Global Healthy Living Foundation negotiated with drug companies and laboratories to get costs reduced. Low-income patients can access the same care as you or I, but at no cost, he said. This is “safety net socialism” Lou said. Ron stepped in to point out that many of his clients take seriously their social mission to serve these communities and those on Medicaid. He said with the latest round of Medicare cuts, massive increases to their labor costs, and insurance companies not recognizing that increase, physicians have begrudgingly had to limit the number of new Medicare and Medicaid patients they see. The reimbursement rates for those programs don’t come close to covering the costs Ron said. He posed the question to Lou of how we move to a more hybrid system when you can’t continue to ask doctors to keep covering the costs. Lou was not optimistic about our current situation, noting that with our capitalist system, every time you try and make a change to healthcare, whether it’s corporations or government, someone loses a dollar, and they are going to scream very loudly.
Matthew asked Lou, what changes to the Medicare or Medicaid system is the Global Healthy Living Foundation advocating for. Lou responded by touching on a subject Ron has mentioned in the past and that is patients need to take ownership of their health. Lou admitted this is not popular, noting that doctors are reluctant to be too aggressive on this topic as they don’t want to lose patients, and patients may not want to be told they need to change their lifestyle. “Patients have to recognize that it’s their responsibility,” he said. He continued by saying that people need to be in a position to avoid health problems in the future. When we don’t do that, he said, we wind up in positions that are untenable, physically, emotionally, and sometimes financially. He referenced how we have become unhealthier since the 1960s, with the rise in obesity and diabetes. The solution, he said, is a long-term educational; effort, much like what was done to reduce smoking. Additionally, we need to look at climate change and the environment, which means looking at the food we eat, the air we breathe, and the water we drink, he said. Addressing these areas helps us have a healthier population he said, then by reducing the demand, you can then look at the healthcare delivery system. “We can’t continue to just throw money at our healthcare in the United States,” he said, noting that the U.S. spends much more compared to other countries.
Ron described how doctors he has spoken with really enjoy working with patients who are committed to owning their healthcare, noting he has also heard physicians’ frustrations with patients who don’t take care of the issues under their control. Ron agreed with Lou and there is a lot that would be fixed by correcting some of these self-inflicted healthcare problems, noting the fact that America has more diabetics than the next 35 countries combined. Ron pointed out that there are many financial incentives in other types of insurance, but virtually no financial incentives when it comes to health insurance to improve our own health by reducing obesity for example.
Lou said there is a “Food delivery complex” here in the U.S. that benefits from us being unhealthy, he said. He pointed out that Pop-Tarts are illegal in the E.U. asking rhetorically which is cheaper, fresh vegetables, or processed food? He noted how the former mayor of New York, Michael Bloomberg got so much pushback on the 64oz fountain sodas. Matthew points out that education seems to be the way to go for now, noting that Canada may require companies to put nutrition information on the front of packaging rather than the back, and asked Lou if it is a step in the right direction. Lou agreed and said he likes the labeling on the front of cigarette packaging with the skull and crossbones that you see in Europe. He said we have a model that worked very successfully in reducing smoking, despite the tobacco companies fighting the effort.
Matthew asked Lou what the current priorities are for the Global Healthy Living Foundation. Lou said the first priority is when the patient meets the healthcare system and comes away with a poor outcome. That could mean something financial or an issue of access. That access could be to a physician or to medicines or treatment. Lou explained that they ask how they can create an environment where people recognize the problem and positively address it. He said, “Not with an objective of making more money necessarily, but the objective of helping patients do that.” The second focus area they are advocating for patients on things like “steering.” This is where insurance companies “steer” you to a particular pharmacy for profit. They are also testifying to legislatures on other topics such as copay accumulators, and the 34OB program.
To wrap up, Matthew asked Lou what he is most hopeful for within our healthcare system. Lou said he is hopeful about the new generation of physicians that are coming to medicine with the right attitude. He said he thinks this generation is coming to the practice of medicine understanding that the financial rewards may not be as high as in the past but their focus on patients is solid. Lou said he is also hopeful about the advances in medicine and treatments. He said the recent therapeutics that address obesity, the idea that cancer is in some cases treated as a chronic disease, and how HIV can now become undetectable are all hopeful signs of real progress. He said that he only sees good results on the horizon, and that “Healthcare as a positive influence on your life I think is what I am most hopeful for.”