As promised, I am reporting back to you about our Truth Hearing held July 31 in Huntsville, Alabama. It took a little longer than I anticipated—I wanted to be sure you could view all the video segments for yourself.
The purpose of our event was to obtain direct testimony from members of the public about difficulties getting necessary healthcare, without adding political commentary that might close off our thinking in regards to solutions. In that spirit, I am going to provide limited commentary of my own and trust you to form your own opinions. This will enable you to share it with friends across the political spectrum.
We had a few technical glitches—this was definitely a learning experience, and we will know better next year how to avoid similar problems. I hope to do this event annually, so we can learn what is happening as our healthcare insurance environment changes. Our volunteer videographer had a broken camera on the day of the event and so was unable to help. I have to thank my husband, who stepped up to find and hire Brian Pitts of Pinnacle Video Services (does legal video depositions) at the last minute. The sound was not as good on the first segments, and fortunately Brian realized there was a problem and fixed it. My friend Sara Crocker and her husband Charlie also volunteered to video, and I used their broader angle for the opening segment.
Here is the opening. We invited several elected leaders—of those, Representative Laura Hall (Alabama Legislature) and Kenny Anderson (representing Mayor Battle) attended. Dr. Richard Showers of Huntsville City Council had planned to come but was unable to do so. Our two US senators, our County Commissioners, US Fifth District Congressional Representative, Regional Health and Human Services Office (will run our state Exchange), Alabama Medicaid Office and Governor’s office declined to attend. All were given the option of attending in person or selecting a proxy.
Community leaders who rose to fill the empty chairs: Benard Simelton (Alabama NAACP President), Sara Crocker (Huntsville’s Human Relations Commission), Ann Denbo (board member National Alliance on Mental Illness, Alabama), and James Robinson (GLBT Advocacy and Youth Services).
I counted 52 in the room, although I may have missed a few who entered after the beginning. By sharing this blog with your friends, you can help keep attendance at our event growing.
I’m going to present the speakers somewhat out of order, in case you only watch a few, because it took us a bit to warm up to more personal stories.
Bonnie Roberts, a fellow poet, told me later she had never imagined she would cry and was not looking for sympathy. I am grateful that she did feel moved to share her deep feelings with us. As you will imagine after viewing the video, she received offers of help (and help) after the event—she wanted most for you to know that she is by no means the only person in this situation. Her story, to me, shows that for extreme medical expenses, most of us even with good jobs will not be able to plan well enough to avoid severe financial consequences. It’s also a reminder that you may know people who need help and who will not tell you about it. They are ashamed. Most of us want to be self-sufficient and to be givers, not receivers. By talking about her situation, Bonnie is giving us valuable information—could this happen to us? What would we do? How would you respond to a person in her position? Bonnie has insurance—Medicare. It did not keep her from having medical debt and ongoing medical expenses so high that she runs out of food at the ends of months.
Benard Simelton, in addition to serving on the listening panel, read Callie Greer’s testimony about her daughter’s death from cancer. Callie so much wanted to attend herself but was unable. I am grateful that she sent us her words and to Benard for reading them. Callie’s daughter was uninsured—she was sent home from the ER with early breast cancer, no physical exam, and a prescription for pain medicine. When you hear it said that uninsured people can always get free care from the ER, this is the story you need to remember.
Thomasin Cates told us how her insurance tried to refuse authorization for surgery to remove a football-sized, life-threatening tumor from her chest by saying it was cosmetic. This sort of thing is more common than you’d think. Here is the description of the policy that will form the benchmark for Alabama’s Exchange coverage—note page 41 where it says coverage excludes services “we determine are not medically necessary.” All insurance policies I’ve seen have this clause. All insurers I’ve worked with drag their feet and deny coverage with it, even when they know they will eventually have to give in. During that foot-dragging time, illnesses can progress irreversibly.
Alix Morehouse has two stories, first about herself and then about her son. She describes a classic Catch-22 in our healthcare system—she needs insurance to have surgery done which would allow her to work at a better paying job—with insurance. She could probably get disability—but she doesn’t want to be disabled. She wants to work. Her son, who is insured, has had ongoing treatment for precocious puberty denied because the insurer dropped the only drug off their approved list and no longer covers it. During the appeals process, his disorder has progressed for lack of treatment. I am seeing more of this problem in my practice—dropping effective treatments off the formulary. Alix’s son has an insurance card that is broken. How many of us have broken cards and don’t know it yet? How will we know?
Margaret Melton, who is insured, tells us how insurance rules have created barriers to getting her kidney stones diagnosed and treated and interfered with physician practice. Her physician has told her that her insurance won’t “allow” primary care doctors to get diagnostic testing for the stones, only specialists. I can’t speak to this, since I’ve not encountered it for stones—I wonder if the issue has to do with the red tape of getting prior authorizations for CT scans and if her doctor is tired of wasting time and getting denied. It certainly does happen with me in my own practice for treatment of minor depression and ADHD, where many insurers will not certify me to do what I’ve been trained and licensed to do. These children must wait for a psychiatrist appointment instead. Bottlenecks occur at the specialist level, delaying care and saving insurers money.
Robert Partlow tells about his struggles to care for his wife through her serious illnesses. Despite their attempts to be proactive, he and his wife have felt shut out of the process of choosing treatments. She is now in a nursing home 100 miles away from him. What would have to change about our healthcare system to be more respectful, responsive and inclusive of the Partlows and others like them? Have you encountered this access barrier of a different sort—inability to find meaningful care where your wishes were sought out and respected?
Don Ramsey tells about his difficulty getting healthcare, and his relief at learning he could get high quality care through the VA. I appreciate his enthusiasm and desire to let others know—certainly any veteran who is eligible should take advantage of the care. Unfortunately, about 1.8 million US veterans are not eligible for services through the VA.
Meg Tilden struggles with insurance that barely allows her to cover her costs and tells of her efforts to help others in our community with their healthcare. She has encountered the world of Medicare Advantage insurers recruiting patients who then learn that their existing physicians and medications are not covered. More competition without transparency means more confusion, and healthcare is not like a toaster we can return if it malfunctions.
Finally, John Jeter, who was actually the first speaker at the Truth Hearing, tells his story of being diagnosed in his youth with Type I diabetes. Good quality healthcare and personal responsibility have been critical to his survival. Mr. Jeter puts his medication and hospital charges under much deserved scrutiny and offers his thoughts on healthcare reform.
In closing, I want to thank everyone who attended our hearing and who volunteered to help. We had volunteers to run the sound system, to set up/clean up and to welcome guests. This event would not have happened without them.
Now you have attended our Truth Hearing. What did you learn? Did anything surprise you? How can we do a better job informing each other of healthcare in the trenches? What could we do differently, armed with the truth?