WASHINGTON — A botched rebound during a pickup basketball game changed the trajectory of Dr. Dana Kuhn’s life forever, sparking a nearly three-decade-long campaign to help people pay for health care that would otherwise leave them financially destitute. His mission to provide at-need individuals and families relief has landed him at odds with the highest government health care regulators in the U.S., and he is taking the fight to Congress.

The federal government is effectively working to upend Kuhn’s life’s mission of charitable giving, he says. He argues that his services balance carefully crafted government markets. His story is compelling and highlights the intricately connected battle between the government, lawmakers, corporations, and individuals in the world of health care.

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It was 1983 and by all appearances, Kuhn was leading a normal life. He was married with two young children, living in Memphis and working towards becoming an ordained Presbyterian minister. He wasn’t overtly interested in health care, had never been treated in a hospital and was planning to dedicate his life to God.

As part of his theological training, Kuhn served a country church in Jackson, Tenn., which was having a fundraising pickup basketball game for the various charitable missions the local community churches supported together. Kuhn decided to play.

“I went up for a rebound and came down and broke my foot. I knew something was not good. I had never been treated before, but I knew I should go to the hospital. They found out I had hemophilia and treated me with a blood product,” Kuhn told The Daily Caller News Foundation.

The blood that doctors gave Kuhn contained both the HIV and Hepatitis C viruses.

“I happen to win the lottery–the medical catastrophe lottery. I got a sample with both the hepatitis C virus and HIV in it,” Kuhn said.

The blood test for HIV did not come out until late 1984 and was not administered until 1985. Kuhn was tested in 1986, and the results came back positive for HIV. His doctor told him to use protection when having sex with his wife, but there was one problem: there was a three-year window where his wife could have contracted the virus. Once again, Kuhn (and this time his wife) won the Murphy’s Law contest.

“I ended up being infected in 1983, and the test didn’t come out till late-1985, early 1986 for HIV. I got tested and it came back positive. I was told that my wife and I were to use protection if we were getting intimate. If you do math from 1983-1986 there were 3 years of potential exposure. My wife ended up becoming HIV positive during that time. It claimed her life 9 months later,” Kuhn said.

After finding out he had a lifelong disease and losing his wife, a situation that could emotionally cripple anyone, Kuhn was now a single parent of 2 preschool age children and in need of some help. He moved in with his parents in Virginia and took a job at a local hospital. The job opened his eyes, much like his own experiences had, to the financial burden health care saddles on families.

I was helping people with expensive chronic illnesses deal with what was happening in their lives … I was watching families lose everything they had, because they had a child that had leukemia lymphoma or one of these other exotic rare chronic diseases. I would watch them spend everything they had and even get to the point where one of the parents had to give up their jobs to become the primary caretaker. Then they had their homes go into foreclosure. As the disease progressed and they dwindled their finances down, they had to get a divorce so that the mother and child could get on Medicaid. Mortality and morbidity would claim the child’s life and it would break up the families further, Kuhn said.

Something Has To Be Done

Kuhn grew tired of watching this movie play out time and again. He felt compelled to act and conjured up a way to help families pay for health care.

“What I did do was come up with a solution-oriented idea. If I could create a non-profit that would provide help with these premiums and co-payments, more than likely these patients, or these families, would stay financially stable,” Kuhn said.

That is exactly what Kuhn did with Patient Services, Inc. (PSI), a $100 million 501(c)3 non-profit that provides people with insurance premium and copayment assistance. PSI helps patients cover the cost of their premiums, co-payments and deductibles.

PSI provided payment assistance to 36,000 people in 2016. The average income of a PSI recipient is around $34,000.

The non-profit has found that their average recipient only needs one to two years of assistance, ranging from $5-15,000 in total. That is all it takes to keep these families from financial ruin.

“Some of the families would then be able to support their own costs after the disease was managed. Others were able to move and find employment that provided them with better health insurance,” Kuhn said.

Kuhn says PSI never had an insurance company reject their cost-sharing payments until 2014, when the Center for Medicare and Medicaid services under former President Obama issued a ruling allowing insurance companies to prohibit their insureds from accepting charitable support (from non-profits, including churches).

Kuhn then took the fight to Washington, D.C., and was able to convince Republican Rep. Kevin Cramer of North Dakota to put forth legislation in 2015 with the backing of 146 cosponsors. He then was able to get Cramer to send a letter in 2017 signed by 183 members of Congress — Republicans and Democrats — to Health and Human Services asking the agency to overturn the ruling. The effort was unsuccessful, as was another in 2017, but Kuhn is trying once again to rally lawmakers behind his cause.

Cramer is trying once again to introduce legislation asking for a repeal of the rule. Cramer put forth a measure in October 2017, a bill that currently has roughly 47 cosponsors.

Why Did CMS Make The Ruling?

The CMS rule requires that Obamacare Qualified Health Plans (QHPs) accept premium and cost-sharing payments from third-party entities, like PSI, for three categories of Obamacare plan enrollees: Ryan White HIV/AIDS Program under title XXVI of the Public Health Service Act; Indian tribes, tribal organizations or urban Indian organizations; and State and Federal Government programs. Other than those categories, CMS encourages insurers to reject third-party payments.

CMS said in its ruling that these payments “could skew the insurance risk pool and create an unlevel competitive field in the insurance market.”

CMS did not respond to TheDCNF’s request for comment.

The agency believed at the time that allowing third-party payers into the market would incentivize individuals to enter the Obamacare marketplace, instead of going with a Medicare or Medicaid plan. The people who the third-party payers would be helping largely mimic the demographics of someone who would be eligible for a Medicare or Medicaid plan.

“People should be enrolled in a plan designed for them, and many people enrolled in Medicare or Medicaid receive additional protections and non-medical services that are not typically available in individual commercial coverage,” Cathryn Donaldson, director of communications at America’s Health Insurance Plans, told TheDCNF.

“Inappropriately steering people into a commercial market that does not meet their needs through third-party payments of premiums is inappropriate and unfair to the patient, and creates further imbalance in the risk pool that leads to increased costs for everyone,” Donaldson said.

The president of AHIP, Marilyn Tavenner, was the former administrator of CMS under Obama and was acting administrator when the ruling was established.

Where Is The Hang Up?

PSI gets a lot of negative attention because it lists a number of big pharmaceutical companies as donors.

The non-profit lists a host of corporate donors, including: Bayer, CVS Caremark, Norvo Nordisk and more. The thinking on the part of those who are against third-party payers is that such donations are made to get a bigger payout or better reimbursement terms.

Donaldson noted this in her conversations with TheDCNF.

“Many of the organizations that are making the premium payments stand to benefit financially (either directly or as a direct benefit to the funding organization through higher reimbursement). They mirror practices that are prohibited in Federal health care programs under the anti-kickback and civil monetary penalty (CMP) laws. Any expansion of eligible third-party entities beyond current regulations will result in higher premiums for all consumers, increased market instability, and decreased affordability,” Donaldson said.

Kuhn does not shy away from discussing his relationships with big pharma. He says they have the money and, to his credit, he isn’t wrong in that assertion. Generic and specialty pharmaceuticals have a market cap well in the hundreds of billions.

“When I created this model, it was created in a way that I would get the money from pharmaceutical companies and specialty pharmacies. They have the money. I knew how to get the money from them,” Kuhn told TheDCNF. “I can get the money, and I use it for disease specific programs.”

PSI’s flagship disease specific program is for hemophilia, a disease one could argue started PSI in the first place.

The question Donaldson and others pose has nothing to do with questioning the altruism of PSI or other organizations like it. Opponents of allowing these third-party payers into the market believe their presence works to unbalance the market, driving consumers away from plans they feel would better meet their needs, like a Medicaid or Medicare plan.

“Insurance companies and those that are against say we are the catalyst for pharmaceutical companies to raise their prices astronomically. I usually say that is a big myth and I’ll tell you why,” Kuhn said.

The ‘Big Myth’ Kuhn Says Is Behind His Opponents’ Message

Kuhn whipped out a chart from his bag and placed it on the table. It’s a simple bullet-pointed argument as to why those that think he is colluding with pharmaceuticals are wrong.

“I love showing this to members of Congress,” he quipped.

He says the myth is that PSI sets the price point. Their presence in the market, insurers argue, allows prices to soar.

“We don’t set the price point when the drug comes out of clinical trials. We don’t write the prescription. We don’t set the reimbursement rate for a drug, the insurers do,” Kuhn said. “Oh, and we aren’t the pharmacy either.”

“All of those are basically the people who make the money. All I do is provide access and affordability,” Kuhn said.

To his opponents, Kuhn has one message: “there is no way I can be the catalyst for soaring prices.”

What Is Kuhn Doing About All Of This?

“We have been in D.C. working very hard to try and get this rule overturned. We had to come up with a way to do it,” Kuhn said.

He’s back in D.C. trying for a third time to get members of Congress to overturn the ruling.

His pitch this time? Show them that what he is doing is not only helping save lives and families, but also saving the government money.

“Here is what I’ll say to it. If we don’t help people that are in this vulnerable area, what is going to happen is they will not be able to afford health care and go to the emergency rooms for their primary care. Then they are going to run up costs in uncompensated care. Who do you think pays for it? We do. It’s our taxes,” Kuhn said.

Overuse of emergency departments is estimated to cost as much as $38 billion in wasteful spending annually. The main drivers of said overuse are lack of access to other primary care services and financial and legal obligations by hospitals to treat all patients who arrive in their emergency departments.

“We’ve been helping the government save money. Now, we can do it. It is mind boggling to me,” Kuhn said.

Kuhn says he hasn’t met with the Trump administration because he thinks it’s better to solve the issue legislatively. He did meet on one occasion with the Obama White House, a meeting he says taught him a great deal about how the Obamacare deal with insurance companies was struck.

Kuhn went to the White House in July 2016 to meet with former deputy Health Director of White House Office of Health Care Reform Jeanne Lambrew. He knew her from years back and was hoping to lobby her towards removing the rule. Lambrew left him with a familiar message: the work PSI does is great, but it works to undermine the government-backed Medicare and Medicaid plans.

“We talked about the ruling. I said, ‘Here is an easy fix. Everybody is talking about filling in the cracks in the ACA. Here is an opportunity for us to fill this crack in. She said, ‘This wasn’t meant to harm, or to deter, non-profits. This is very important work that you do.’ She also said ‘we are concerned about certain populations and how that may be looking to steer people on to the marketplace plans.’”

Kuhn believes her statements reveal that some sort of deal was struck between the administration and insurance companies to get the Affordable Care Act settled into law.

“My interpretation was that now I understood that more than likely there has been a deal cut with insurance companies. They (Obama admin) had to make this work—the ACA had to work. If the insurance companies are complaining about having all these sick people on their plans, why not let us help out?,” he asked.

He said he offered Lambrew a solution, and she said she would follow up but never did.

Kuhn and his partners believe they can rally enough lawmakers to support their cause this time around, but insurance companies, their lobby arms and supporters of the Affordable Care Act will likely not give up without a fight.

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