Episode 96 Recap – Special Edition: Remembering Dr. Dan Hurley

The Print version of the FLATLINING Podcast

In this episode of the FLATLINING Podcast, Matthew and Ron discuss the life of the late Dr. Dan Hurley with his wife Dr. Traci Hurley, a board-certified pediatrician, his sister Christine, and his brother Tom. They shared memories of his life and why he fought so hard for transparency in our healthcare system. Readers may recall that our team spoke to Dr. Dan Hurley last year on the FLATLINING Podcast after he was diagnosed with dedifferentiated chondrosarcoma and his insurance company had denied payment for radiology scans that would have aided his treatment.

The podcast starts with Matthew introducing and welcoming Traci, Christine, and Dan’s younger brother Tom. The siblings shared their early life in the Hurley household and how Dan was a smart and innovative problem solver at a very early age. Tom shared Dan’s solution to their dad’s moratorium on playing video games at a specific mall, sharing that Dan pointed out that their dad did not say they couldn’t visit the other mall in town, which happened to be a more treacherous bike ride than the banned location. His sister Christine said although the future Dr. Hurley was a problem solver, he was also a rule follower. She said he once, like many kids, decided to run away, reached a certain stop sign they were not allowed to cross, and could not bring himself to break their father’s rule at that particular border, and returned home. Christine shared that Dan was quite smart, so much so that one of his teachers stated he was answering all the questions in class, and he ended up skipping several grades.

Traci shared how they met and described their first meeting at the beginning of medical school. She said Dan was only 19 when he entered medical school. Explaining that from their first dinner outing with fellow students, they became fast friends. She said they were best friends and then started dating after about six months. “We were inseparable,” she said. People noted it was always “Traci and Dan” or “Dan and Traci.”

Ron asked about what it was like meeting this 19-year-old medical student and if it was intimidating. “It was hard to be intimidated by Dan, he was just so down to earth and goofy and funny. He just made everything so much more fun, and I think everyone in our class that knew him well would agree to that,” she said.

Matthew asked Traci to share what it was like dating and attending medical school together. She said that dating was a natural progression of their friendship since they were together all the time anyway with their studies. “Studying usually looked like me spending hours in the library actually studying and Dan reading magazines and taking naps on the couch, really just wanting to be with me.”  Not wanting to make it sound like Dan did not work hard, Traci explained that he was one of those people who could read something one time through and remember it. She remembered that Dan would occasionally point out that she did better in school than he did. She chuckled and said she would remind him, “That is because I worked five times as hard.”

The couple dated for four years got engaged, and married a year later.  She said they had a religious difference; Dan had been raised Catholic and Traci was raised Jewish. “He was a lot more, I guess, observant in his religion than I was and it was very important to him to make sure that everything was done correctly in the eyes of the Church and there were things I had to think about as well, and if I was willing to do those things, so we did not rush it, we took our time.”  Traci shared that religion never was an issue between them and credited their mutual understanding and respect for each other and their beliefs.

Matthew asked Traci how Dan came to be an Otolaryngologist, and she said that he had an interest, like herself, in pediatrics, but during their clinical rotations it was clear that Ear, Nose, and Throat (ENT) is where he wanted to work. Ron recalled that Dan had pointed out that “He got the best of both worlds, since a decent part of his practice were kids.” Traci agreed, saying that he was one of the main physicians who saw children in their area, and he enjoyed that aspect of his practice as well as complex sinus disease.

Matthew shifted the discussion to Dan’s final years and asked the guests how their relationship changed when Dan received his cancer diagnosis. “One of the things that struck me most about his diagnosis was how selfless he was,” said Christine. Explaining, that when he received the news, he immediately called his siblings with instructions on how they could help his family as they worked through what was to come. “He wasn’t thinking about himself, he was thinking about his family. His diagnosis was never an elephant in the room,” she said. She said he kept his sense of humor to make it easier for everyone. Christine said that all the siblings were very grateful to Dan for not pushing people away. He wanted people to visit and planned a vacation with his siblings to Sedona Arizona.  

She emphasized that Dan never asked, “Why me?” with his diagnosis. She said his attitude was more “Why not me?” She explained that he thought that he was well-equipped to take on this challenge. She recalled Dan saying that he had a supportive family, he knew how to take on the insurance companies, and he had the medical knowledge and contacts to see this issue through to the end.  Christine explained, “For me, it was seeing his gratitude, his selflessness, that came out of that.” Although she always thought of her brother as a “Great guy” she said witnessing the degree of these attributes during his illness made her grateful for that time with him.

Tom echoed his sister’s description and shared a story about a time when Dan had received some bad news on his prognosis, and it was near Christmas. He said Dan was adamant that this news not “Cast a pall over the holiday” and did not want the focus on himself. Tom explained that since they lived in opposite ends of the country, they did not get to see each other as much as they would have liked, maybe once a year or so. “I saw a lot more of him actually in the last couple of years of his life, and I was very grateful for that,” he said. Tom said Dan’s approach of inviting people to visit during the last years of his life allowed him and others to have that extra time together. Christine added that the family is so grateful to Traci, noting that sometimes people want to withdraw when this type of situation enters a family, but Traci, she said, welcomed them along with Dan and it resulted in them getting to spend a lot of time with him the last 18 months of his life.

Traci reiterated to Christine and Tom that the feeling was mutual, saying the family was the “Rock” that she and her children needed to lean on in this difficult time. “We needed your support, and you guys were there for it,” she said.

Traci acknowledged Ron’s description of Dan as a “solutions guy” and said from the first diagnosis, Dan had a “let’s go” attitude. She said he made lists of who they needed to call, where the expert specialists in the country were, and so on. “From minute one, we were full speed ahead in trying to solve problems,” she said.  Traci described herself as more the worrier in their relationship whereas Dan was more logical and had a lot of faith which helped him, she said.  She thought his logical approach and matter-of-fact dialogue was Dan’s way of keeping her and the children calm. She said this was a very stressful time and “He just had a very calming way, it was very important for him to show the children he handled this with grace, both his illness and his death truthfully.”

Ron said that listening to the family talk about Dan and his final days helped put the rest of the picture together for him of a man he only got to know at the end of his life. Ron told how Dan reached out to him when he read an article Ron was quoted in concerning insurance company medical denials. He said Dan asked if he could spare some time for a call. Ron described getting on the Zoom call and seeing this gentleman getting treatment in a hospital bed. He shared his amazement about Dan’s attitude of wanting to help others that face medical denials from their insurance company like he was. It was the fact that Dan was taking time away from his treatment to try and help others that amazed Ron most, he said. Hearing how unselfish Dan was, Ron said he doesn’t think he could do what Dan did but often finds himself asking himself, “What would Dan do?”

Matthew recalled his conversation with Dan and noted that he was very “matter of fact” about his diagnosis and seemed at peace with it. That seemed to give him the ability to focus on how he could help others, he said. Traci said their experience with his insurance company denials wasn’t the first time, the couple had to deal with this issue a few years earlier with one of their kids. She said their attitude was at first, “Here we go again.” His sister said she thought it lit a fire under him, saying that Dan had shared with her that he had always wanted to fight for insurance reform, and thought that now was the time to do it and so he went to law school. Christine described Dan as not one to seek the limelight and as a very private person, but he was willing to step out for the sake of other people and share his story. Tom shared that he had heard Dan talk about insurance reform earlier and said he cared a lot about patients and how they interact with their insurance company and had asked what they might do about it. “The diagnosis and what came after it was just sort of a catalyst that took it to a new level,” and noted that Dan would never say “This isn’t the best time for me to do this.” Tom explained that Dan looked at this situation and thought that it is going to compel him to do something, and he wasn’t going to wait until it was convenient.

Ron shared his amazement that Dan attended law school all to help patients he would never know or treat, but still had them on the forefront of his mind while he fought his cancer and the insurance company.  He said what struck him about Dan, was that it was not about him, it was about those who would come after him. Ron said he told Dan once that he wanted to make sure others understood how courageous he was. He said Dan corrected him, saying “That’s not what this is about, it’s about the patients who are not going to have to do this because of whatever groundwork I do.”  Traci agreed and emphasized that this effort was never about him. She shared Dan was a lifelong learner and law school was something he wanted to do. He loved to read and attending law school was not a surprise to her. She said after the surgery that removed half of his pelvic bone, he was sitting around and told her that he “Might as well take the LSAT and see how I do.” She said she responded with an “OK” he then applied to one school and got in with a scholarship and he took that as sign, she said.

Matthew said that Dan had written a letter to several of the insurance company's medical directors as part of his appeal to denied prior authorization requests. Ron read the letter that expressed Dan’s thoughts on how the insurance company's medical director’s decisions impact patients’ lives. Dan’s letter said how they as physicians are making medical decisions on patients they have never seen or treated. He talked about the hours practicing physicians must dedicate to prior authorizations or appealing denials. He said that these precious hours not used to treat or counsel patients have untold negative impacts on them and their doctors. He talked about the negative effects on patients fighting the denials and how many cannot pay out of pocket as he has done so they go without care.

Dan described his disease, his family, and his goals for changing a system that he saw as not having the patient at the center. “I want to bring transparency and accountability to delays caused by medical decision-making in the authorization process,” he said.  A process, he explained, that was put in place by insurance companies and their reviewing doctors. He addressed the lack of experience and specialty among insurance company medical directors, and their lack of knowledge adding days or weeks to needed treatment for patients.

The letter described his philosophy about medical guidelines, and how they are to be balanced with experience and individual attributes of the case that is before a physician.  “Guidelines are no substitute for experience and clinical judgement,” and pointed out that a non-practicing pediatrician upheld his denial for treatment even after a phone call with a nationally respected sarcoma expert. To illuminate his point, Dan shared the story of the “Miracle on the Hudson” pilot Capt. Chelsey Burnett “Sully” Sullenburger. Who in 2009, during U.S. Airways flight 1549, safely landed his plane on New York’s Hudson River after birds took out both engines. Dan explained that Capt. Sullenburger didn’t just blindly follow the guidelines, he combined procedures with his vast experience to save all aboard that flight. Dan said the passengers benefited from Sully’s expertise, just as he is trying to benefit from his physician’s expertise.

In the letter, Dan noted the physician’s specialty as oncology and pointed out that he had never seen Dan as a patient. Then described the difficulty he had in tracking him down, finding him only after filing a required written request to the insurance company and then finding his name at the back of a 100-page document. Dan pointed out that all this work was to get one CT scan approved so it could be applied to his deductible, even after paying $1500 per month in premiums.  He reminded the physician that cancer patients will get many scans and complex treatments and said he was lucky that he knew how to fight this unfair system, most people don’t.

Dan closed the letter with, “If I can help even a few patients who don’t have a voice from being harmed emotionally or physically by an unethical system I will have partially succeeded in my goal.”

Matthew asked Traci as a physician how this journey with Dan has affected her perspective on prior authorizations and the denial process. She said that her perspective has changed quite a bit. She said she had done some prior authorization with her practice, and she recalled her and Dan having discussions about the challenges, where Dan would share now and again that he had been on a “Peer to Peer” call with a medical director and that the physician deciding the authorization would not even be an ENT doctor.  She said Dan would ask the medical director for his phone number, which he did not want to give out. Dan would then say he needed it so he could have his patient make an appointment with them since they seemed to know what was better for his patient than he did. Chuckling, she said the authorization would then get approved. After hearing all those stories from her husband, Traci said they were living through this scenario “Over and over and over again.”

The experience paid off when their internationally recognized Oncologist doctor had Dan in a trial in Santa Monica, California. Traci shared that one day their physician came to Dan and asked him to speak to his human resources people because he was on peer-to-peer calls with gastrointestinal physicians at the insurance company and told them that they don’t know what they’re talking about. “In typical Dan fashion he puts a presentation together,” she said. Dan had contacts on their human resources and benefits team that helped him connect with the insurance company's medical director. Traci explained that instead of Dan telling this doctor to fix the problem, he provided him with this presentation and offered to help the medical director improve their prior authorization process.

According to Traci, in that presentation, Dan mentioned a very helpful insurance company nurse. She had followed up with Dan after his previous surgery to see how treatment and recovery efforts were going. When she asked if there was anything she could help with he said yes and explained the prior authorization conundrum regarding his PET scan.

Traci said that this request was nowhere in this nurse’s job description, but she promised to look into it and would try to help get it approved. In Dan’s presentation to the medical director, Traci said he mentioned this nurse and some other data personnel who were helpful. After hearing Dan’s presentation and acknowledging he would get the presentation to those working to improve their processes, the medical director suggested that this nurse be his Critical Care Coordinator. “Our critical care coordinator was this amazing woman that was so caring and so helpful to us that every time we got a denial she would help us get it in front of somebody who needed to see it and help us get approved what we could get approved so that was a huge help to us,” said Traci.  

Ron said that he understood that this story was more than just getting one PET scan approved, and asked Traci to share some of the more egregious prior authorization challenges they faced during this journey.  She shared that during one of his 24-hour chemo treatments his blood count dropped, and he needed a white blood cell augmenter that required an “Urgent” prior authorization. In insurance speak, “Urgent” meant a 72-hour turnaround for approval, this was a Friday she said, and they needed it now because with his blood count dropping it was likely he was going to end up in the hospital over the weekend without it. She said he was simultaneously receiving radiation treatment, so they were traveling between the two locations. Tired of waiting, she said they decided to pay for it out of pocket. Eventually, someone was able to get ahold of their critical care coordinator and she was able to get it put through so he could get the medicine.

Traci explained about another time that Dan’s radiation treatment had been denied and there was a specific date to begin receiving this treatment.  She said the appeal had been pushed back several times and again their critical care coordinator stepped in to work on it. Moving ahead on their own and the same day they were walking into the lobby of the radiation treatment center, they received a call that it had been approved.  Simultaneously Dan received an automated call that the radiation treatment had been denied.

Traci went on to share that the earlier chemo treatments she spoke about were at first denied, then approved, and later that summer his chemo-immunotherapy was initially denied then approved. The worst was yet to come, “After he passed away and he [had] got the chemo, we got a letter saying that the medical director at EviCore overturned it and said it was not medically indicated after he knew it was approved and he got it, we are talking about $80,000 worth of chemo-immunotherapy.”  Ron pointed out that none of these treatments were out of the norm, explaining that these are the best tools that the medical team had to combat Dan’s disease.  But his ire was on the medical director, who knew the treatment had been approved but went back in and denied the approval, i.e. payment of $80,000 worth of care. Adding insult to injury, the letter was dated on the same day that Dr. Dan Hurley passed away.

Traci said she tried to do what Dan would do and attempted to find this physician, who she said was an oncologist, to see if he had treated someone with dedifferentiated chondrosarcoma. She explained that chondrosarcoma is rare and Dan’s subtype, “dedifferentiated”, is even rarer, which means there are not distinct guidelines for treatment. In the end, she determined he was retired and only worked for EviCore. Traci said that it is highly unlikely that the medical director was a sarcoma expert. She said Dan’s treatment plan was developed and approved by the Mayo oncologist in their hometown of Phoenix in collaboration with their oncologist in California, who is an international sarcoma expert.  

Ron pointed out that EviCore is owned by an insurance company which can lead some to wonder what their motivation is. He said that a skeptic might say that if EviCore approved too many treatments then the insurance company will find someone else to do their third-party review for prior authorizations. Ron said that sending a letter like that in his mind, is emotional abuse, given that the Hurley family was mourning the loss of Dan. Ron emphasized that this was not a one-time PET scan that did not get approved, but a “Constant battle for both of you that extended past his passing. That in my opinion is unacceptable behavior.” He said he knows this type of situation was a motivating factor in why Dan wanted to change this process so someone in the future would not have to go through the same thing.

Matthew asked Traci and the family what was going on now to carry on Dan’s efforts and if anything had changed.  Traci said Dan had met with an attorney and said they had been in contact with her to discuss how best to move forward with this. “He wanted to bring transparency and accountability to the physicians on the insurance side who deny, and delay care as recommended by the patients chosen physician.” Traci emphasized that it is about holding physicians accountable for their decisions who claim that they are not “medically indicated” and the fact that these medical directors should be considered “practicing medicine.” This is a difficult spot to be in for a patient, she said. Traci pointed out that Ron had said in the past that a medical director signing a denial letter should be treated the same as practicing medicine, and “That’s what Dan would have wanted as do I.”

Traci said they are doing some advocacy through the Chondrosarcoma Foundation. She said the foundation has set up an endowment fund in Dan’s name to help patients navigate through denials and they are working on a case now. She said the president of the foundation, Jeff Kramer, is wonderful and has embraced what Dan was trying to do, and “We are so appreciative of that.”

Ron recalled a conversation he had with Dan where he said that he did not object to questioning doctors and acknowledged that they are not perfect, but he emphasized the patient needed to be at the center of the conversation and if a medical director for an insurance company had information that Dan didn’t have, then he wanted him to call so they could talk about what was best for the patient. Ron said Dan’s focus on transparency, open dialogue, and accountability was a “Very interesting approach.”

Ron said that some states are now looking at reforms and North Carolina has some legislation to address what Dan was working toward. “If we can get this thing started in a few states it will spread to other states and hopefully nationally.” Ron said this cause is the right thing to do for patients because there is too much money involved to expect that insurance companies will change on their own.  

Matthew wrapped up by asking Dan’s family what inspirations they take away from Dan’s life that might be helpful for others. “Above all else, Dan has taught me how to be a better person,” said Traci. She said Dan was truly a good person and always tried to do the right thing and do everything with humor. She acknowledged her bias, but “He made the world a better place, he really did.” Christine agreed, saying he even used his humor in his diagnosis, noting he went out and “Got matching canes with my dad who is 88.” She shared that Dan always said, “’If I could just help one person by this’ and he has already helped multiple people.” Christine said that she knows someone locally who has been helped. This person read articles by Ron and Wendell Potter and decided she could fight her denial. Christine credited this awareness as giving people courage, and Dan would have been happy to see this. Tom explained that many of us may want to do good things but are intimidated or don’t know what to do or how to start. But with Dan, “If he saw something that he could do, he would just do it.” He said that he would like to be more like Dan in this way and maybe we might all make this our inspiration as we take on the challenge of insurance reform and prior authorizations. Tom said there are things that need our help, and maybe we could bring more of a spirit of helpfulness. He said so now, “I am just going to do it and not hesitate.”

Ron closed saying that he did not think Dan ever thought “I am only one guy, what can I accomplish?” He noted that Dan did not seem to worry about having a large impact and was more about making at least a small impact. Ron said he did not seem to get hung up on the size of the problem but approached a big problem by tackling the first small one, then the next, and so on, not ever giving a thought that he would be around to see the final outcome.

Matthew thanked the guests for spending time on the podcast with them to raise awareness of this issue and reminded patients that they too can fight their insurance company denials.