Accessing PH Treatments In Prison: A Caregiver’s Story on How He Helped His Son from the Outside
By: Craig Courtney
This is a story of a young man, Matthew, with aspiring potential, only to see his future lead to dread and tragedy, and then to one of hope. Matthew graduated high school with Honors and was accepted to three University of California schools. As a result of circumstances, he instead enrolled in the Honors program at a local community college. Unbeknownst to me, Matthew disliked the community college. He got involved with drugs and became a daily marijuana user. In the summer of 2007 he resorted to unlawful activity. He was arrested the following March, dropped out of college and entered drug rehabilitation for four months while out on bail. Matthew was arraigned in September 2008. In June 2009, Matthew and his attorney accepted a plea arrangement for 32 months in the state prison.
Meanwhile, Matthew started to experience shortness of breath, but delayed seeing the doctor. In May 2009 he finally saw his primary care doctor, who said he was probably feeling anxious about his upcoming court appearances and prescribed him anti-anxiety medication. By July Matthew started getting swelling in his feet, indicative of the onset of right heart failure. He went back to the same doctor, who ran an electrocardiogram (EKG) and a myriad of tests that resulted in Matthew being admitted to the hospital. Matthew was diagnosed with idiopathic pulmonary hypertension and interstitial lung disease in November 2009.
Over the next 11 months Matthew’s condition stabilized, although I remained concerned about the progression of his PH. As Matthew was waiting to be incarcerated, his PH doctor, who has gone above and beyond the call of duty on several accounts, wrote two letters about Matthew’s PH. Even after Matthew’s attorney presented these letters to the judge and I spoke directly to the head district attorney, Matthew was taken into custody by the California prison system on November 30, 2010. Before Matthew was cuffed, the bailiff let me give Matthew a hug. His hug was very firm. I sensed he was understandably scared. This would be the last hug with Matthew for the next 15 weeks. The next hug would be under entirely different circumstances.
One of many things that the PHA website taught me as a PH caregiver was to always be prepared. That October, I typed up the list of Matthew’s five medications and their dosages and had his attorney insert it in Matthew’s court file. I also gave a copy to Matthew on the way to his last court appointment. That was great advice because within 36 hours I received a call from a nurse at the infirmary where Matthew was transferred to in the middle of the night. The nurse was almost frantic about Matthew’s PH and his high uric acid levels. He and the doctor didn’t understand PH at all. The next day I dropped off a 10-day supply of Matthew’s PH medications, ambrisentan and sildenafil, with the nurse. I followed the same procedure 10 days later.
Matthew was transferred to a reception center at Los Angeles County Prison in Lancaster, CA. The day he was transferred to Lancaster, the pharmacist called me and requested that I meet her at the prison’s visitor center. I drove 75 miles that same day to bring a 30-day supply of ambrisentan and sildenafil to Matthew.
I was let through the front gate, only to face five big, armed guards at the visitor center who looked at me like I was crazy. They told me, “You don’t understand! This isn’t jail, this is prison! Nobody brings medication here!” Medication transfers from the “outside – in” had never been done before. They reluctantly called the pharmacist who sent her assistant to the visitor center. The assistant explained to the guards the reason for the medication transfer: ambrisentan cannot be obtained from just any pharmacy.
Thirty days later I followed the same routine and I met the pharmacist for the first time; I shook her hand vigorously. Meanwhile, the prison was able to get the sildenafil rather quickly and the pharmacist had already begun the process to have the California Department of Corrections and Rehabilitation (CDCR) pay for the ambrisentan. I worked with the PHA to have them send the prison doctor a medical information packet. Accredo helped the prison doctor, who was not familiar with PH, enroll with the Letairis Education and Access Program (LEAP) in order for Matthew to obtain his ambrisentan regularly.
|“I also learned that there is a community of support among the prisoners. Many of the other inmates who had visitors greeted Matthew as he walked by. They were quietly cheering him on.”|
Matthew’s pharmacist at Lancaster was so helpful, but Matthew was soon transferred to California Men’s Colony (CMC) State Prison in San Luis Obispo (SLO). Everything started out fine for Matthew, but when I eventually learned that he had been placed in the prison hospital because of viral bronchitis he had contracted while in general population, I made hasty arrangements to drive 200 miles to visit him. Strangely, he denied my visit on the first day, but I tried again the next day and unexpectedly found him to be in a wheelchair and on oxygen. The guards wouldn’t let him stand up, but I hugged him anyway. He told me he refused my visit because he didn’t want to be seen in a wheelchair and on oxygen.
The next time I visited Matthew, he was able to walk, albeit slowly, on his own accord. I later found out that Matthew was supposed to be on oxygen and in a wheelchair during that visit. I also learned that there is a community of support among the prisoners. Many of the other inmates who had visitors greeted Matthew as he walked by. They were quietly cheering him on. It’s not all about fights and unrest.
I stayed in contact with the PHA all this time and when I told them about Matthew’s situation, they sent a letter to the prison on Matthew’s behalf. The letter stated that Matthew should be seen by a PH specialist and gave two such doctors, one in Torrance and another one local in SLO. The letter made its way up to the chief medical officer at CMC. Within four weeks Matthew was seen by the local PH specialist, Dr. Ryan, in SLO. The PH specialist was extremely helpful and gave me a complete synopsis of Matthew’s PH condition. Unfortunately, his right heart pressures were still high and his heart’s capacity had been significantly curtailed. He was only able to do 250 feet in the 6MWD. Matthew was devastated by the news, and especially that treprostinil was now the obvious medication for him.
Dr. Ryan, who remained in communication with the CMC doctor, felt the treprostinil could be managed at the CMC hospital. However it would have to be approved by the CDCR headquarters in Sacramento and I knew convincing Matthew would also be a challenge. Or, I should say Matthew needed to convince himself. The thought of wearing an infusion pump administering the treprostinil subcutaneously on his abdomen was very difficult for Matthew to accept. Matthew decided to start on inhaled treprostinil. This required close cooperation by Dr. Ryan, his primary care physician, Dr. Amoto, and the CMC medical social worker, Chelsea Emerson. They worked together to get it approved by the CDCR, and then advocated for special clearance for the Tyvaso (inhaled treprostinil) specialist to come and train Matthew and the nurses.
I’m not going to give up advocating for Matthew. I am also not going to give up advocating for others afflicted with PH. Through this whole experience I have felt a positive sense of humanity. All those who come in contact with PH become part of a family–a family of support, resourcefulness and hope. The PH family is helping keep my son alive today. I thank the PHA and all those I have referenced above who have supported me and Matthew.