Do you remember my post back in September helping to publicize the Costs of Care essay contest? Well, the judges have acted and picked the winners. Organizer Neel Shah writes Two of the winners are from Boston, including an internist who described how a pharmaceutical cost-shifting strategy left him unable to discharge his patient from the hospital, and a medical student who described how she was able to treat a patient in her clinic on a $100 budget by avoiding an unnecessary hospital admission. In all, we received more than 100 submissions from patients and providers all over the country that illustrate both challenges and opportunities to improve the value of care.
We also plan to summarize the lessons learned from the stories we received over the last two years in the form of "quick guides" and educational web-based videos that we will release over the next few months.
I'll print two of the essays in this post and two others by patients below in a separate post . Here is the first one Neel mentioned, by Andrew Schutzbank.
Peggy was in her early 70s and suffered from a terrible lung disease known as pulmonary hypertension. So bad in fact, that she had a pump infusing a medicine under her skin 24 hours a day to keep the blood supply to her lungs open. Once started, this medicine, treprostinil, was known to improve life in those with pulmonary hypertension. Unfortunately, like all continuous infusion medicines of this type, it has the unfortunate side effect of sudden death if stopped for more than 4 hours. Starting it was a difficult choice for Peggy and her expert team of physicians, but her disease had progressed to a point where it was the right decision. As you can imagine, this drug was mighty expensive. We would only find out how expensive later.
On the day that I met Peggy, she was being admitted to the Intensive Care Unit (ICU) not for her pulmonary hypertension, but because she had a bleed in her stomach, which caused her to swallow blood/stomach contents into her already damaged lungs. Once stabilized, our first challenge was to ensure that she continued on the treprostinil. It took a little magic from pharmacy and the drug’s manufacturer, but we were able to get everything together and Peggy was no worse for the wear.
A few days later Peggy was improving, breathing tube out and awake and back to herself. Due to the special nursing needs with treprostinil, Peggy was required to be in the Cardiac Care Unit (CCU), a special type of (ICU), despite her progress. Even though Peggy managed this medicine at home by herself, hospital policy prevented her from transitioning out of the ICU to the general medical floor, at a fraction of the cost. Conceding that point, the decision was made to try and transition Peggy directly to Rehab. But her progress was stalled for one simple reason: treprostinil.
It turns out that if Peggy were to go to a rehab, they have to pay for her medications out of the money they receive to care for her. As it turns out, treprostinil costs $1400 per day. $1400. Now, Peggy does not pay that amount, she has a special arrangement worked out with the company and the state. But in order to make that arrangement work, the company charges full freight for the drug when the patient is institutionalized. Since the drug cost alone would wipe out payment for her stay, no rehab would accept her. So Peggy was stuck in the hospital, and stuck in one of the most specialized and expensive beds in the hospital in the CCU.
Think about that for a moment. A critical care bed was tied up for days for a patient that was well enough to leave the hospital, just not ready to go home. Arbitrage was suggested—would it not make more sense for our hospital to buy the drug for her at rehab, freeing up the CCU bed (which costs far more than daily dose of treprostinil). But we are doctors, not financial engineers. We work in the world of medicines and were unable to orchestrate such an unusual arrangement. So we did the only thing we know how to do. We stopped the expensive medicine.
This was not a financial decision. Peggy had been describing vague body pain, a known side effect of all prostaglandin medicines. Think of treprostinil as a 24-hour infusion of anti-Ibuprofen. Her breathing was actually quite good despite her recent trials in the hospital, so stopping the medicine made medical sense. We monitored her closely during the transition and she quickly improved! She was able to move around more and started on recovery. She was transitioned to a rehab shortly thereafter and continued to improve.
My colleagues’ decision to stop treprostinil was a medical one. But ironically, we would not have considered it if were not for the cost factor of the medicine. Peggy would have gone on for some time on an expensive medicine that was not helping her. At the same time, it was through one party’s insane attempt to “control costs” that simply caused costs to be shifted and multiplied. The entire health care system spent much more on Peggy’s care because no one had the vision or authority to deal with $1400 a day. Pennies compared to the amount wasted, and nothing compared to the risk undertaken by Peggy and her family during this trying time.
And here is the second essay mentioned, by Molly Kantor.
As a third year medical student, I spent one afternoon each week at a health clinic at a community hospital affiliated with my medical school. This health clinic was focused on primary care for patients with HIV, and many of our patients were poor, homeless, immigrants, or uninsured. Many were also living with their diagnosis in secrecy and had to hide their medications and medical bills from family members.
One of my patients, who I will call Clara, was a 65 year old Haitian immigrant who diabetes, heart failure, and depression, along with HIV. Due to her medical conditions, she was unable to work. She had two grown children, but they did not live nearby and did not know about her medical problems, especially her HIV. Her husband, unfortunately, was very ill and lived in a nursing home. Clara somehow managed on her own, but her lack of insurance, poor medical literacy, and limited English proficiency made it difficult for her to stay healthy, and she was constantly coming to clinic for help.
At one visit, Clara seemed unusually tired and revealed that she had been feeling short of breath at home. In my mind, this raised many questions—Could this be a heart attack? Worsening heart failure? A blood clot in her lungs? Pneumonia? I took a history and did a physical exam, and my top concern was that this was an episode of worsening heart failure, what we call a heart failure exacerbation, and this typically occurs because the body accumulates too much fluid that the heart has trouble pumping it all so it backs up into the lungs. Usually, this is a patient who you would send to the Emergency Room (ER) and have them admitted to the hospital so that they could get diuretics (water pills) and slowly lose the extra water—all while being carefully monitored in the hospital. However, Clara refused to go to the ER. “Too expensive,” she stated firmly. “I can’t go into the hospital again.”
We realized the burden this would have on her and her family, so we worked around the problem by getting an EKG done right in the office and getting a chest x-ray. When her EKG and chest x-ray supported our diagnosis, we decided to give her the diuretics as an outpatient and to have her come back for a second office visit in a few days. When she returned, she felt that breathing was much easier, and her physical exam supported the improvement. Instead of this heart failure exacerbation costing thousands of dollars for an ER visit and hospitalization, this cost only a few pills (furosemide 80mg PO costs about $0.29 per pill, and she was prescribed this once daily in addition to her normal medications) plus an extra primary care doctor visit, which runs about $100.