The following is a real letter written to the governor and several legislators for the state of Florida. It was written in response to the new legislation concerning the Prescription Bill passed into law this year. At this point in time none of our esteemed legislators have chosen to contact the writer and offer some time to discuss this draconian over-reaction of what is admittedly a very serious problem in Florida.
The quick description of the situation is that the state of Florida is prescribing and dispensing more oxycontin and oxycodone than all of the remaining states added together. This problem was addressed by a new bill passed this year, HB 7095 which became law as stated earlier. The purpose of the law was to prevent doctors, pharmacies and patients from prescribing, dispensing and obtaining these medications for the purpose of making money, getting kickbacks and getting high. Those individuals who were not abusing the system and were using the medications as medically defined were dumped into the bill and denied access the the medications that allow them to live a somewhat normal life. The solutioon should not have been to combine those with medical necissity with the lawbreakers who were taking advantage of the system.
Unfortunately when you take adverse measures and make a decision to deny medications to individuals who are legally and medically in need of them in the attempt to stop the criminal element who does abuse these medications you have destroyed the lives of far too many in an effort to bring a difficult problem under control. A simple registration for patients at their doctors and pharmacies would curtail the abuse of the medication and deny those who are abusive at the same time without punishing the individuals who are sincerely in need. If you would like more information about this law, follow this links: http://www.leg.state.fl.us/Statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=0400-0499/0456/Sections/0456.44.html
Office of Governor Rick Scott
State of Florida
400 S. Monroe St.
Tallahassee, FL 32399-0001
Re: Prescription Drug Bill Recently passed
Dear Governor Scott,
I write to you today regarding a serious matter of life and health. I hope that after reading my life’s health story you will understand the urgent nature of my plight.
I was born in 1959 with severe hemophilia, factor VIII deficiency. I spent nearly 2/3 of my youth in hospitals and the remaining 1/3 of that time trying to make up for lost school work and trying to remain healthy. In those years, only fresh frozen plasma was primarily available to treat the frequent bleeding episodes which were prevalent for me and others with severe hemophilia. About the age of 12, a new medicine appeared in the form of concentrated factor which made my hospital visits nothing more than outpatient infusion, allowing me to return home and to a more normal life. This advance in medicine and treatment made a tremendous positive change in my life. These medical advances progressed to allow me and other hemophiliacs to self infuse clotting factor at home without hospital visits. This miracle in treatment protocol allowed me a freedom I had not experienced before. I was able to enter college and started to live a more normal life.
Tragically, a failure of clotting factor medicines and the failure of proper government oversight of these products affected all of those persons with bleeding disorders and users of blood products to be grievously harmed with many dying as a result of these failures. In 1982 my doctor alerted me to a then unknown virus that was killing people with bleeding disorders and for which there was no cure. We avoided the new medical protocol of self infusion and returned to the old treatment methods. Unfortunately, it was too late and I was diagnosed with HIV in 1984 and later with Hepatitis C due to the contaminated blood products.
My miracle treatment and the life altering quality of my life were forever changed. My struggle with severe hemophilia became a struggle to remain alive due to government and pharmaceutical manufacturing failures. I was lucky to have caring physicians who partnered with me to control my hemophilia and to combat the HIV and Hepatitis C viruses that by all accounts were a death sentence. My physicians were wonderful and I recall one doctor who cried as he gave me the dire news and prognosis. I am grateful for these healers who take their oath and calling seriously. If not for them, I would not be alive to write this letter today. I am a survivor whose survival is once again seriously threatened.
I am alive today through the grace of god as I have taken many lethal medicines to fight the HIV virus progression. The treatment and attempted cures for Hepatitis C have left me deathly ill and I nearly died in 2005 after numerous attempts to treat my illness. My only hope for cure is a liver transplant but such is not readily available for those who have all of my conditions. I fought the fight side by side with my physicians who have been with me the entire way and I miraculously attained a state of some improved health despite the treatments which have caused pancreatic damage and resulting in the additional diagnosis of insulin dependent diabetes.
By 2006 my body had been severely damaged and I live in great pain from day to day. Severe pain is typical for a person with severe hemophilia and with all of the other conditions from which I suffer. Once again, a great physician came to my assistance when I did not know where else to turn. My doctor prescribed and monitored a combination of oxycontin and oxycodone which gave me the most relief with the least problems. This protocol results in pain management with no ongoing euphoria. This medical treatment allows me to think clearly and to be a productive person who returned to work after having been on public disability benefits for quite some time.
Once again, government action has brought my recovery, disease and pain management to a complete halt. My physician has advised me that recent Florida law now prevents my continued course of treatment and the pain medications which are vital to my productive life are not able to be prescribed in my medical situation. Apparently the existence of drug abuse and a desire to curtail the same has resulted in a draconian over reaction, in my opinion and that of my physicians, which prevents my continuing appropriate medical treatment.
I am now no longer concerned about a matter of life and health but one of life and death as the pain is so severe that the toll potentially taken is quite serious after a 50 year fight for life ending with another government related action.
Certainly there are more reasonable methods to address the state’s concern with prescription drug abuse without punishing persons like me and I’d like to meet with you to discuss these ideas and other solutions to these issues. Seeing me will put a face on the person, the patient and the resulting problem created by this legislation.
This is by far the most obscene miscarriage of justice since I watched half of my blood brothers die from HIV. My quality of life had improved to such a point that I became an advocate for persons with bleeding disorders and the co-infections of HIV and Hepatitis C. I served as the president for the Hemophilia Federation of America (www.hemophiliafed.org), a national non-profit advocacy organization, for 2 years.
Governor Scott, I have nowhere else to turn and plead for your help and ask that we meet. I am a proud man, but I am begging you to stand up and do the right thing, not just for me, but for all of those who have been abused by this overreaching law that causes more harm than good and punishes the innocent with a life sentence.
name withheld for reasons of safety and privacy
Those who wish to get involved in taking existing legislation and changing it into a bill that cleans up the abuse in our system while at the same time allowing those who have medical necessity the access to their medications which, in some cases is the only answer to their severe pain issues, please contact me via email. I will put you in touch with those who are attempting to bring some sanity into an insane bill that has become an insane law. Their are many additional pieces of reference material that are important in this effort to restore patients rights but they are too mnumerous to list them all here. If you want further information please feel free to email me at: RMarks1959@gmail.com The more we speak up, the sooner we will be given an opportunity to bring about change for an unjust law. I know the writer could use your help as could thousands around the state. Let’s take this opportunity to think about those who have bigger issues than we do and try to bring about change for them, simply because it is the right thing to do!! Thank you