Note: The testimony presented here consists of witnesses' prepared statements and are not official transcripts of the proceedings.
Testimony of Charles H. "Stoney" Jackson, Jr.
Hearing Accutane - Is this Acne Drug Treatment Linked to Depression and Suicide?"
Tuesday, December 5, 2000
Thank you for inviting me to come hear and testify before this committee today. This will be very difficult for me to talk about however it is extremely important for me to be here before you today, if it will prevent just one parent from having to experience the pain and grief that my family has had to endure then all of this will be worthwhile.
In April of 1997 I took my oldest son Clay who was 14 years old at the time to his first appointment with a dermatologist. His course of treatment was the normal expectation for any teenager, monthly facial cleansings and antibiotics. In September of 1998 at the age of 15 Clay's treating physician added the use of Brevoxyl gel to his treatment. In June of 1999 Clay was now 16 years old and could take himself to see the doctor, his treating physician changed his medication to Retin A. In August of 1999 his treating physician changed his medication to Differin. Each time the dermatologist would change Clay's medication Clay would come home and tell us that they had changed his prescription and we need to take it to the pharmacy to be filled.
On October 6 1999 at age 16 Clay's treating physician decided it was time for Clay to begin using Accutane. The doctor ordered a blood test and sent home with Clay a brochure, copyright dated 1994 Sixth Edition, about Accutane with all of the benefits and with a whole host of side effects of which 90% did not pertain since Clay was a male patient. It did mention depression, only if you had a family history of, but there was no mention of suicide. Clay explained that the doctor needed our permission before he could prescribe this medication. Clay explained the side effects that the doctor told him he could expect which were dry skin, chapped lips and could easily be sunburned. The doctor told Clay that he knew we did not have a drug card with our health insurance plan, so Clay needed to talk to us before he would write Clay a prescription because it was very expensive and he was concerned whether or not we would be willing to pay for the medication. Wanting what was best for my son and some of Clay's friends at school were using the drug, so I decided to give my permission to start his treatment. A decision that has haunted me now for the last 60 days. On October 15, 1999 I had the first prescription for 40mg of Accutane filled at the pharmacy for Clay to take. The pharmacist said for Clay to be careful and wear sun block every day because he could be sunburned very easily and that he could expect to have dry skin and
chapped lips. The same thing the doctor had told Clay earlier. There was never any discussion with the doctor or the pharmacist about the risk of suicide while using this drug.
As predicted Clay's skin did become very dry, his lips would get chapped and if he forgot to apply sunblock he would get sunburned. His acne did get worse in the beginning and then it began to clear up. He did experience some back pain the first month while taking the medication, this was the only side effect that Clay had that we weren't expecting. Everything else seemed to be normal.
Then on January 13, 2000 our 17 year old son and my best friend, Clay, died from a self inflicted gun shot in our home. Around 4:00 PM in the afternoon my wife and my 10 year old son came home to find Clay's lifeless body dead in his bedroom. I will never be able to remove what they saw that day from their memory, this will stay with them for the rest of their lives. Clay had left school at noon to come home and eat lunch which he did on several occasions. When he did not return to school none of the teachers or administrators thought much about it, Clay was so involved in so many different activities they assumed he was attending one of these.
At the time and for several months, nobody could explain what possibly happened on that day. Was this an intentional act or was it some horrible accident that could have been avoided. During the course of the investigation of Clay's death by the Sheriff's department, the investigating officer asked if Clay was taking Accutane and did we think this drug might have attributed to his death. We replied that yes Clay was taking Accutane but thought it to be ridiculous to think that could possibly have anything to do with his death, it's a skin medicine to clear up acne. The officer agreed with us and he continued his investigation. The final cause of death as determined by the county medical examiner was that Clay shot himself.
On October 5, 2000 my wife and I caught the last 3 seconds of a story on the 10 o'clock news on a local TV station. We both looked at each other and asked what was that about. I went to my office the next morning and pulled up the local TV station's website and found the story that caught our attention. It was a very brief story and did not tell a whole lot. I asked the four ladies working in our office if any of them saw the story. They had all four seen the news story, it was about Congressman Stupak's loss of his son, they said it was a story about a young man that had lost his life and the only thing different about this young man and Clay, was their names. I went to the House of Representative's website and found Congressman Stupak's website where I found that he had already created a folder for Accutane. What I pulled up on Congressman Stupak's website was unbelievable for this would be the first time that I had ever seen or heard anything about the FDA ordering the drug manufacturer of Accutane to include suicide in their product warning as far back as February of 1998. I spent the rest of that day going to various Internet search engines and typing in the word accutane. I was astonished to find so much negative information concerning this drug and that this information had been out there for so many years. Why didn't we look into this before we agreed to let Clay take this. Then we thought maybe it did say something in the packet and we just overlooked the million word small print on the warning label that came with the packet. I went to the local pharmacy where we had all of Clay's prescriptions filled and asked them if there was a computer printout that had the warnings and side effects or was it just the stuffer that came with the packet. They said there wasn't anything on the computer, the only thing that they provided was what came with the packets. I asked if they would mind removing one of the warning stuffers and let me see it. They removed one and as I suspected, it had no warning concerning suicide. I asked them if they knew there was a new warning label out concerning this product and they said they had heard something about it but wasn't sure, something was on the news or something, but they had not seen anything in any of the trade journals that they receive. I then asked if they would mind checking all of their inventory of Accutane and see if by chance any of them had the new warning label. They removed all of their packets from their inventory and none of them had the new warning.
My wife and I left town for a few days to get away, but before we left I contacted some insurance underwriters, nurses, other pharmacist and friends to look into this matter for us and to get back with us to make sure this wasn't just an isolated case. We were overwhelmed by the amount of responses that we received reporting that this was not an isolated case and they provided us with even more information concerning all of the psychological side effects associated with this drug. And the fact that this information had been made available for several months prior to Clay beginning to use Accutane.
All of a sudden all of the pain that we experienced at the time of Clay's death was coming back. It was as if we had never grieved at all, we were having to relive this nightmare again. More unanswered questions kept us up at nights and brought out a stage of grief that we had not experienced until now. ANGER!
How could a doctor send an outdated brochure home with a sixteen year old to talk to his parents about taking this powerful drug without the doctor ever having any conversation with the parents. How did he not know about these psychological side effects, or if he knew why didn't he tell us about them. How can a doctor prescribe a medication that is clearly licensed to be used as a treatment of last resort and for the most severe cases of acne. Clay's acne was very mild, there was no reason for Clay to be using Accutane. Why was his main concern whether or not we were willing to pay for this treatment.
How can a drug company receive such a stern warning from the FDA to change their warning label and not recall all of the outstanding inventory in all of the pharmacies and make that change immediately. Why has it taken so long to make the changes to their warning label. Their slow response and denial of the need for the new warning makes you suspicious of what are they trying to hide that we don't know about.
As an insurance agent for 22 years I had to ask myself Why would an insurance company pay for a drug that contains such a warning about the risk of suicide that is being prescribed to teenagers.
Clay was not a depressed teenager, he was full of life. He was a member of the 4-H of which he held various offices over the years. He was nominated to the Who's Who in High School Achievement his Freshman, Sophomore and Junior years. He was in the Gifted and Talented Program at school. He was on the Varsity Baseball Team for his school as a Freshman and as a Sophomore and was already being recruited by several colleges and universities. He was also an active member of the FFA, serving as Vice President for his local chapter and the Lubbock District FFA. Clay was on the Chapter Conducting team and participated in many livestock shows around the state. He was a member of the Courtesy Corps at the last National FFA Convention in Kansas City, Mo. and at the first National FFA Convention in Louisville, Kentucky. Clay also competed in UIL Persuasive Speaking, Clay recognized that having all of the knowledge in the world wouldn't benefit you if you couldn't speak in public or have the ability to express yourself. Evidence of this is a poem that Clay wrote for his Advanced Placement English class on October 26, 1999, just 11 days after he started his treatment of Accutane. ( A reprint of this poem is included at the end of the packet) The two things that Clay loved doing more than anything, livestock shows and playing baseball, were just about to begin, the first stock show was scheduled for the day after he died. Clay didn't have time to be depressed there was too much of life yet to experience and too many dreams left unfulfilled.
Congressman Stupak's son died more than five months after Clay died. I have to wonder what if I had taken the investigating officer in Clay's death seriously and looked into his suspicions about whether the drug Accutane had something to do with Clay's death. What if I had found then what I know now and what if I could have garnered this much attention, would his son be alive today. I don't guess we'll ever know that answer, but what if we don't do anything now, how many more teenagers will die needlessly and how many parents will have to go through the most painful experience that you cannot even begin to imagine.
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