Topic

lupus

8 petitions

Started 2 months ago

Petition to General Assembly, Rick Scott, Department of Veterans Affairs, Perry Thurston

Legalize Medical Marijuana

Millions of people just like me deal with severe chronic pain that is not controlled by even the strongest pain medications. Along with that, many opiate medications have severe side effects such as kidney and liver damage, severe constipation, and worse addiction. Because of the growing number of people overdosing on these dangerous medications, it is becoming increasingly difficult for chronic pain patients such as myself, to obtain the medications needed to help them function. Many times we are sent to ERs that should not have to see us just for chronic pain issues and they really don't want to. We are further stereotyped as drug seekers, when in fact, we're only seeking relief so that we may continue being productive members of society. If medical marijuana was legalized it would not only decriminalize it, it would reduce black market purchasing of the drug, people could obtain safe accurate dosing. At the VA, the emergency rooms are full as it is, with wait times exceeding 4 hours. Could you imagine having to wait in an ER for 4 hours while in some of the most excruciating pain of your life?  Marijuana can be so beneficial not only for chronic pain suffers, but those suffering with PTSD, chronic migraines, depression and more. Im a U.S. Navy vet who has fibromyalgia and Lupus. I'm also a nurse trying to get her career started. I had a fibromyalgia flareup and was so fatigued I slept for nearly 48 hours total. I was in so much pain that I curled into a ball and didn't even want to breath too hard in order to keep from feeling the pain anymore. I lost two days of work and missed several family events that I didn't have to if I had been able to use a cannabis treatment. When I finally made it to the VA both my primary and rheumatologist explained that they couldn't write me anything for pain due to regulations put in place by the VA and my only course of action was going to the ER. When I did, the waiting room was full with a wait time of 4 hours. I was fed up with everything and tearfully went home. No one should have to live in the pain that conditions like Lupus and fibromyalgia bring, nor should we have to sacrifice other body systems by taking opiates. This why I believe that medical marijuana should be legalized in Florida and more importantly the VA. Thank you, resspectfully, Ms.Danyale L.Miller,LPN

Danyale Miller
7 supporters
Update posted 7 months ago

Petition to Centers for Disease Control and Prevention, Federal Drug Administration, US Congress

Change current CDC guidelines for chronic pain sufferers

The CDC changed the guidelines for opioid pain treatment in 2016 without consulting the public or the FDA. The FDA is the only government agency that can pass regulations on the use of prescription medications.Millions of Americans suffer from some form of Chronic Pain Syndrome. If you are not a CPS sufferer chances are you have a family member or friend who is. How might this effect Non- CPS consumers? What is to stop the CDC, FDA, or DEA from deciding one day that muscle relaxers, antidepressants or seizure medications are being overused and/or abused? This is not impossible. Each of these classes of drugs are also used to treat chronic pain. THIS IS NOT JUST MY STORY BUT ALSO THE STORY OF MILLIONS OF OTHERS. In 2003 I had a household accident. I was treated with hydrocodone for the acute pain. However, 6 months later I still had the pain but in more places in my body. It took 5 more years of doctors and specialist to finally get a reason for the pain. Fibromyalgia. By that time I was put on a maintenance dosage of Oxycontin ER (extended release) and my life became functional again. I still had days when the pain was unbearable but they where few and far between. In 2013 I developed polyneuropathy from being a diabetic. I began taking Lyrica. In 2014 I was finally referred to a pain management clinic. They made me start from the beginning. I had to go through every non-narcotic pain treatment for 3 months to see if it would manage my pain. Of the 11 different medications; six did nothing for my pain and the other 4 I developed severe allergic reactions to. Ah ha, so it back to the Oxycontin ER. Finally life begins to look up again. I had 4 months of a functional life back. In June 2015, after getting my monthly prescription for the Oxycontin, I was told my insurance would no longer pay for it. My sole source of income being SSI, I did not have $385 to fill the prescription. I called my pain doctor and he tells me he wondered if the insurance would pay. Apparently many of his patients were having the same problem. Now it is Oxycodone for the pain. What I discovered about the difference between extended release meds and immediate release meds is this; extended release will actually work for 10 to 12 hours whereas immediate release meds (especially narcotics) last about 3 to 4 hours but you can only take them every 6 hours. So much for my functional life. This went on until August 2016. By then everyone in the CPS society knew the CDC was on the warpath about Oxycodone. Too many people in West Virginia were killing themselves taking the stuff. It did not matter that most of those people did not have either a prescription or legitimate pain problems. In August of 2016, at my usual monthly pain clinic appointment, my pill count came up short. Every month you have to bring in your prescription bottle so the medical staff can count them. It was their way of dealing with abusers. The prior 3 weeks I had had a significant jump in my daily pain levels. I called the doctor and let him know the usual 60 mg per day was not helping at all. I was told I could increase my daily dosage by one 10 mg pill. So I did.  End of the line, you are now a drug seeking junky. That was how I was treated. No more pain meds and no need to make another appointment. This is the standard practice if you are short on your pill count. I sat there in shock when I was told this. I did not count the pills myself. I was allowed just enough oxycodone to get me through the withdrawal period. I went to my primary care doc and she put me on a drug that is supposed to suppress the urge for narcotics and relieve pain. I spent 5 days in hell going through oxy withdrawal.  All I got out of 4 weeks of use were blisters in my mouth, horrible diarrhea and stomach cramps and a boat load of pain. Can I get back on the oxy now I asked her. NO. You are an addict and I cannot give an addict narcotics. It took six weeks before my rheumatologist finally took pity on me and gave me a script for oxy. The type of treatment, I described above, is widespread throughout this country for anyone suffering from chronic pain. Not every chronic pain sufferer is an addict.  I am asking you to email your congressional representatives, call the CDC and FDA. Tell them that the new "guidelines" are cruel and inhumane.

Xaja Mykil
43 supporters
Update posted 12 months ago

Petition to Paul Ryan, Diane Savino, Tom Rooney, Doris Matsui, Mike Honda, John Moorlach, Bill Keating, Ileana Ros-Lehtinen, Eddie Johnson, Patty Murray, Geraldine Thompson, Crystal Peoples-Stokes

CHANGE SOCIAL SECURITY DISABILITY APPROVAL GUIDELINES FOR LUPUS WARRIORS!

We need a more equitable disability determination process for Lupus sufferers based on our special circumstances. The current system does not accurately reflect the current state of our symptoms, it does not always have qualified specialists making determinations about our unique disease, it does not reflect the early onset that we face, account for the often full-time hours we spend maintaining our health, nor does it properly account for the relapsing nature of our disease. Originally I was given 3 weeks until organ failure. Only after 2 years of near-death experiences, and simultaneous chemo and dialysis while in the hospital did I apply. After denial and with lots of professional help, I was approved nearly 2 years later. But many fellow Lupus warriors are not so fortunate. Now as a leader in the Lupus community in transition, I see firsthand that many are unjustly repeatedly denied, but cannot work. Many are either fired or die trying to maintain their jobs by skipping appointments and medications or die waiting for approval. This has got to stop. We can do better as a nation. As Lupus warriors, we already feel invisible. Help to equitably care for and recognize the plight of Lupus and other chronic illness sufferers. Help us and our families overcome. Sign and support this petition and push forward disability reform for Lupus applicants today. We propose the following: 1. A Lupus applicant's qualification for disability should not be based on 20 year-old outdated American College of Rheumatology Criteria unless updated to be more relevant to today’s more wide reaching symptoms and the current state of Lupus. Lupus is not the same disease it was 20 years ago, with a completely different prognosis. The A.C.R. criteria was not originally meant for diagnosis, but for clinical trials and population studies. Lupus is a specific and complex disease, determinations should be based on current data that is no more than 2 years old. 2. Disability Determination Services should only arrange consultative examinations with the applicant’s primary source of treatment. A reported 73% of doctors reportedly feel uncomfortable diagnosing and treating an autoimmune disease. Any independent parties making determinations should only consist of Rheumatologists who currently actively treat Lupus patients in their practice. 3. Since the onset of Lupus starts at 15, affects most at childbearing age, with more than half at an earlier age having more severity with kidney involvement, we believe that the special exceptions in place should have a lower age for the credit threshold. We believe that the minimum age for special exemptions should start at 18 vs 21 or younger Lupus applicants be given a flat rate benefit of the average SSDI amount. The current 21 year-old threshold puts those with Lupus at an unfair disadvantage considering many may not have the normal 5 to 10 year work history needed to qualify for disability or to actually earn enough credits to have a sufficient benefit amount to survive. 4. Disability qualification and re-determination considerations should include the amount of healthcare activity including appointments and treatments an applicant is currently engaged in for health maintenance. Similar to Social Service’s consideration of a person’s job seeking activities, applicants cannot for example engage in substantial gainful activity if we spend a minimum of 4 hours a day, 2-3 times per week traveling to and attending doctor’s appointments, labs, imaging, treatments, infusions, prescription pick-ups and therapies. Particularly with organ-threatening Systemic Lupus, multiple specialists are required to be seen for continued prescription fulfillment for the medications required to maintain our health. We should not have to choose between keeping a job or staying alive if we are in this predicament and are unable to qualify for disability because our health maintenance time is not currently a consideration. 5. As Lupus is a cyclical disease of flares and remission, approval and re-determination should be based on our flares in the prior term vs. just the time of the determination interview. This is the time frame that should be assessed when determining severity against the Federal Code of Regulation’s definition of basic work activities. Our abilities and aptitudes within that flare should be evaluated, including physical functions and carrying out instructions. We are likely to experience at least those levels of flares again in the future or something more progressive since Systemic Lupus is degenerative. We consider if our worst day becomes our everyday, then this is how we will have to function physically, financially, etc. That is how we budget our futures, money and energy. That is how a disability determination for Lupus should be made by the Social Security Administration.

Lupus Activist Seda Bryant
812 supporters