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Help Florida Patient's Lost In the State's Crackdown on Legal Pain Management Narcotics

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Watch Amanda's Story  - Recorded and Produced by WVZN - ABC 7- Video

Anchor's Comments on Amanda's segment  - Video

I have started this petition to amend Florida’s House Bill HB 7095 to allow seriously ill patients to receive the pain medication they need.

My dear friend Mark and his beautiful wife need your help desperately.

On October 11, 2010, Amanda Jakubowski came home from a normal day at work and was hit with what equated to a “24-hour bug." Since that Friday night in 2010, she has not been able to eat much more than 100-200 calories a day, subsisting on a few crackers and Gatorade.  Weeks and months went by until she was finally diagnosed with a semi-rare, non-curable illness called Gastroparesis. Along with the malnutrition, Colonic Inertia, Slight Diffuse Joint (Acute polyarticular arthritis), a non-functioning rectum, and an unknown autoimmune to name just a few of diagnoses preventing her from living a life outside of her bed.

 WHAT IS GASTROPARESIS?

Gastroparesis (or GP) slows or stops the movement of food from the stomach to the small intestine.  The symptoms generated by the stomach’s inability to digest food, severely diminishes the quality of life for the vast majority of patients and disable about 1 in 10 patients with the condition.

The most common symptoms of gastroparesis are nausea, a feeling of fullness after eating only a small amount of food, and vomiting undigested food—sometimes several hours after a meal. Other symptoms of gastroparesis include, gastroesophageal reflux disease (GERD), also called acid reflux or acid regurgitation—a condition in which stomach contents flow back up into the esophagus, the organ that connects the mouth to the stomach. Severe pain in the stomach area, abdominal bloating, lack of appetite and malnutrition due to poor absorption of nutrients or a low-calorie intake and decreased quality of life, including not able to live a normal life due to more severe symptoms. While most people are stricken with GP due to underlying causes, mostly commonly diabetes, Amanda’s Vagal nerve was damaged by the bug that she acquired on 10/11/10, destroying communication between the stomach and the brain.

AMANDA’S GASTROPAESIS

Amanda’s Gastroparesis is in the well-advanced stages. Here is the short list of the ailments Gastroparesis is doing to Amanda’s body in 2017.

She is malnutrition and weighs 90 lbs. Her body is consuming her muscles and tendons, and her bones are shrinking. Her nausea is so intense, triggering intense wrenching even after a sip of water at times. Her throat is sore from stomach acid vomiting and badly blistered as she has gastroesophageal reflux disease (GERD.) She currently has 8 abscessed teeth, had 13 root canals in 2015 alone, and will lose the rest of her teeth other than 4, should she be able to have dental work done soon due to the acid from her vomiting, rotting her teeth and causing tooth loss. The pain from hunger pangs makes the pain almost unbearable. Her colon is basically non-functioning at 5% - It remains full, expands each day with the little that she can eat.

Amanda had surgery on Jan 11, 2017 to replace a pacemaker stomach device the size of deck of cards into the layer of skin “fat” below her belly button which protrudes through because she weighs 90 lbs., 20 lbs. of which is fluid retention, as she is still recovering from the incision into the muscle to replace the device.  Retaining fluid is common for her as her body stores the fluid instead of taking in nutrition.  No nutrition means they hold onto what they can.

WHY AMANDA IS NOT BEING HELPED?

To crack down on illegal street selling of pain medication, the state of Florida passed Florida House Bill (HB) 7095 in 2011. Also, known as the “pill mill bill” HB 7095.  It banned physicians from dispensing powerful pain medication. The bill prevents physicians and specialists from prescribing these powerful opiates. Dr. Rosenthal, Amanda’s GI physician, is 3 hours from her home at the Cleveland Clinic in Fort Lauderdale, FL. Essentially, physicians have their “hands tied” for fear of lawsuits and health insurance restrictions. The few pain management doctors that she has seen have only able to prescribe her the set amount allowed by law.

This means that patients must go to only those doctors certified in pain management (PM) to be prescribed Schedule II and Schedule III controlled substances. It also tightened regulation of these pain management clinics, limiting the amount of potent pain medication such as oxycodone or morphine that a wholesaler can sell to a retail pharmacy (pain management clinic) in a month, and set up a permitting process for a pain management clinic. Basically, each pain management clinic doctor can only order a certain amount of these narcotics each month. Amanda needs more than the doctors believe. Therefore, gaining new patients to make more money is more important to pain management clinics rather then helping a near-terminally ill woman should modern medicine continue to fail her.

Read the entire bill

https://www.flsenate.gov/Session/Bill/2011/7095/Analyses/h7095z.HHSC.PDF

She depends on these pain management doctors to ease and maintain her level of pain. These clinics only manage the amount of pain medicine they feel should be prescribed based on what they believe to be the patient’s pain level.

Amanda is released from these clinics because they close without notice or the doctors are skeptical of her illness. Amanda is currently not able to receive the proper dose of pain medicine for her level of pain. Because Gastroparesis is a semi-rare illness (http://digestive.templehealth.org/content/Gastroparesis.htm) - that effects more than 1.5 million Americans, with approximately 100,000 suffering from a severe form of the disorder. Standard medical therapy fails to relieve symptoms in approximately 30,000 of these patients, many pain management doctors do not know or understand the extent of her illness. In her most recent pain clinic release, Amanda was told that she was being released from the practice because the doctor could not and would not risk his license when he didn't know if she was really in pain, per her diagnosis.

Mark says, “Amanda will start withdrawal, again this week (3/16/17) for the 3rd time. She cannot go to the hospital as they won't treat her unless her blood pressure drops dramatically or some other ‘semi-emergency’ that comes up. I have tried to contact, to no avail, The Board of Medicine, individual doctors on The Board, their private practices, The Department of Health, my Florida state representative Michael Grant and my Florida State Senator Greg Steube. Some the 'staff' of those that did answer, could not even pretend to care that my wife is in extreme pain all day, every day, while others had no idea how to help.”

WHAT WE WANT

First and foremost, we want Amanda comfortable. She needs the pain to subside so she can do “normal” things such as walking her dog, sitting on the beach or even taking a weekend vacation.

We want answers and HB 7095 amended.

1. Work with board of medicine and health department to formulate a hotline that doctors can immediately contact while the patient is in their office to request more information on a disease(s), malady(ies), or symptom(s) that a pain management specialist does not have extensive knowledge of, to get an unbiased and educated opinion on the needs of the patient...to provide care for a patient that can provide recent (1 year) documentation from a specialist stating that the patient suffers from said issue(s) so that the patient is not turned away while still in need.

2. Add an addition to the Florida E-FORCSE website (http://www.floridahealth.gov/statistics-and-data/e-forcse/) where physicians who do not specialize in pain management can suggest or recommend that a person suffering from a disease that they DO specialize in very well may be in need of pain medication.

3.  Violation of Florida law to set an appointment with a patient that has a refill date, only to release them from practice without cause of or proven signs of abuse within 21 days of set appointment, or when the patient is due to refill medication.

4.  Physicians who can provide proof of full compliance with all protocols will not be subject to punishment via any state office or department.

“Too many times our skepticism trumps our better judgement, and that person who you think might disbelieve that need might be the genuine article. Because, I can promise you my wife is just that, and a certified, verified, proof positive genuine angel.” –Mark Jakubowski

Amend Florida’s House Bill HB 7095 to allow legitimate seriously ill patients to receive the pain medication they so badly need to maintain their pain.

Please sign this petition and give Amanda and those like her a voice.

 

 

 

 

 

 



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