Petition to Medicare, United States Department of Health and Human Services
End Gag Orders that Force People to Pay More for Prescription Drugs
What if you went to pick up your prescriptions at the drug store, and the pharmacist failed to tell you that you could get your medication for $10, $20 or sometimes even $100+ cheaper? This happens a lot more frequently then people think -- it might have even happened to you. And the reason? Gag orders that pharmacy benefit companies place on pharmacists that bind them from telling patients that they could get their drugs for cheaper prices. The President and a host of bipartisan lawmakers have said this practice needs to end. Yet the Centers for Medicare and Medicaid Services stopped short of requiring that these gag orders stop immediately. In the meantime, thousands of people could be paying way more for their drugs because of these gag orders. It's time to send a message to big pharma and demand that Medicare and Medicaid put in place policies that prohibit and end these unjust gag orders than punish people in need of medication. There's already movement on this issue -- several states have already moved to ban these gag orders and legislation has even been introduced in the U.S. Senate that would end the practice of big pharma placing gag orders on pharmacists. But big pharma is fighting back -- even suing to prevent a North Dakota bill that bans gag orders from becoming law. It's not right -- pharmacists shouldn't be forced to lie to patients about drug prices by greedy pharmacy benefit corporations, and patients shouldn't have to shell out more money than they have to for already expensive drugs. Tell the Centers for Medicare and Medicaid Services to not just pay lip service to condemning these gag orders, but to enacting real policy that ends their practice entirely in the health care industry.
Petition to John Kasich, Rob Portman, Sherrod Brown, Mike DeWine, Richard Cordray
Repeal ORC 2919.21 So That Adult Children Are Not Bankrupted For Elderly Parent Care
Ohio is one of 30 states that will go after adult children for payment of care costs for aging parents on Medicare/Medicaid. In contrast to other states, Ohio treats this as a criminal matter with the first offense a misdemeanor, the second, a felony. Most adult children faced with these lawsuits are attempting to build their own retirement, fund college education for their own children and may have other debts restricting their means of payment. They are part of the “sandwich” generation: still responsible for their own children, while having to take on care of elderly parents. A payment schedule found online puts a family of 4 with a $22k annual income (below poverty rate) responsible for more than $300/mo in payments. Any income above this is responsible for the entire bill. If the child lives in Ohio, they can be sued if the parent(s) live in another state. Conversely, if the parent lives in Ohio, those children living out of state can also be sued. This is due to one line in Ohio Revised Code 2919.21. It requires care for elderly impoverished, which has translated to payment for devastating medical costs of those elderly and impoverished. The cases that had been dismissed are only those of parental abuse or abandonment as a minor. What is not fair is that parents that did not contribute to college, weddings, grandchildren, left no inheritances or otherwise...they are getting those bills paid by the adult children that never received that support as adults. The court arguments only address treatment as minors. These bills are being paid by those who have been estranged adding insult to injury. Parents can be bad people as adults and to force payment for the alcoholic, addict, emotionally, verbally, physically or financially abusive parent is just not moral. In the case of the petitioner’s best friend, the mother lived in Ohio, was poor, qualified for Medicaid; however, due to never getting a final divorce 20 years ago, due to lack of funds, the father was brought in. Once it was determined no money could be obtained from the spouse, the nursing home went after the daughter, who resides in Kentucky, to the tune of $60k. While many states won’t impoverish children with the burden of their parents’ medical care bills, Ohio and Pennsylvania are two of the more nastier states that will criminally prosecute and use liens and garnishments. Siblings can also sue each other under this statute. Children may have had zero input or knowledge of financial transactions for medical care, but can still be legally required to pay those bills under this Ohio law. This is unfair and an undue burden on children who are not the Power of Attorney holders, as it’s well known that not everyone is forthcoming to all siblings with that information. This is especially true in families that have tensions and dysfunction without the additional layer of potential financial responsibility. To make matters worse, this law is fairly obscure, but thanks to healthcare costs, it’s being used and abused much more to the surprise and chagrin of adult children nationwide. Repeal 2919.21 so that adult children can invest in the future instead of paying for the past.
Petition to Flemming Ornskov, Howard Mayer
Grant compassionate use of experimental therapy for a life-threatening childhood disease
Our 2 year old daughter, Radha Rangarajan, was diagnosed with late-infantile metachromatic leukodystrophy on April 13th, 2018. Without treatment, Radha will experience a rapid neurological decline over the next couple of months resulting in incapacitation, leaving her non-verbal, blind, and prone to seizures. The disease then plateaus leaving her in a vegetative state for several years, with most children not surviving past their 8th birthday. There are no available treatment options and Radha is not eligible for any clinical trials. Shire Pharmaceuticals has developed an enzyme replacement therapy, SHP611 (also known as HGT-1110), which has undergone early testing with promising results. Our requests for compassionate use of the medication have been denied by Shire despite this being her only chance at life. Radha's condition continues to worsen every day and by the time Shire's proposed follow up trial begins enrolling patients it will be too late for her as the disease will have progressed too far. We respectfully request that Shire Pharmaceuticals grants compassionate use of this enzyme therapy for our sweet little girl. Her life depends on it. Please sign this petition to show your support for compassionate use of SHP611/HGT-1110 for Radha Rangarajan. Thank you.
Petition to Blue Cross Blue Shield
Healthcare Approval for David Thompson!! #approvedavidnow
My dad, David Thompson, was diagnosed with stage 4 Non-Hodgkins Lymphoma in November of 2017. At diagnosis, my dad was given a 10% chance of survival. After 6 rounds of intense CHOP chemo, those statistics didn’t change. He was in remission but there was a 90% chance the cancer would return and it would return quickly. He would then be considered terminal. He received a stem cell transplant earlier this year which pushed his survival rate to 50%. With the help of this clinical trial of Keytruda, a drug in which the FDA has fast tracked for the use of Non-Hodgkins Lymphoma due to its amazing response rates, my dads odds of long term survival can go up to 70%-80%! Basically, my dad NEEDS this trial drug. Here’s the problem: My dad has clinical trial benefits which Blue Cross is DENYING him. Not only have they denied the trial, they have thus far refused to provide us a copy of the peer-to-peer denial so that we may respond via appeal. In fact, BCBS of Oklahoma claims they don’t even have their denial on file. The peer-to-peer denial was May 16th and yet we have no paperwork and no reason stated for denying at the peer-to-peer level. Basically, Blue Cross is now stonewalling any appeal efforts we could put forth. Blue Cross and Blue Shields of Oklahoma is shamelessly denying my dad this potentially life saving drug. We have under 240 hours to get my dad to Houston and get the drug administered before he is no longer eligible for the trial. For this reason, I am asking for YOUR help, your friends help, our state and local legislators help, the help of news media in both Oklahoma City and Houston, and ANYONE else with the knowledge and drive to help my dad get the treatment he needs! We have started a hashtag #ApproveDavidNow to help get the word out on social media and our goal is to get it trending. So please help us fight. His life depends on it.” #approvedavidnow We call on Blue Cross and Blue Shield to express blatant transparency with their patients and to promote honest and open health care!! Let’s get this trending!!! #approvedavidnow #approvedavidnow
Petition to Horizon Blue Cross and Blue Shield N.J.
Insurance refuses to pay for Life Saving Operation for Ovarian Cancer
I am seeking any way I can to get the word out about insurance companies giving death sentences to women diagnosed with Ovarian Cancer. I have Horizon Blue Cross and Blue Shield N.J. health insurance. Three and a half years ago (October of 2014) I received a diagnosis of Stage 3 Ovarian Cancer. Ovarian cancer, according to the Cancer Treatment Centers of America, is usually diagnosed after menopause. However, some have been diagnosed as early as their 40’s or 50’s. This is not what you would label an “old person’s disease”. I began treatment with IV chemo, surgery (complete hysterectomy) followed by more IV chemo. By June of 2015 I was in remission. I was in remission for two years. Two weeks before Christmas in 2017 I was told the cancer was growing. It had now spread to the liver, spleen and diaphragm. My doctors at Cancer Treatment Center of America, Chicago told me my best (and only option quite honestly) is a procedure called HIPEC Surgery. Without this procedure, the cancer will continue to spread. Our insurance pre-certification was submitted and surgery was scheduled for Tuesday, March 20, 2018. On Friday, March 16, after a day of pre-op testing, BCBSNJ notified the hospital the claim was being denied. This was an hour before everything shut down for the weekend. The reason? BCBSNJ is calling it experimental. This procedure was approved by the FDA in 1999. Two appeals have been filed and denied. As an alternative, my doctor wanted to perform surgery to remove the tumors (called debulking). Now we are being told this will not be approved because it was part of the original request for pre-certification. The part of this procedure they are labeling as experimental is a heated chemo placed in the abdominal cavity for two hours. How can they say no to a life-saving operation that has been performed for 20 years?! I have spoken to others who have had the same diagnosis, received the procedure and are living healthy lives today. So yes, there are insurance companies that do approve this. My husband and I are middle class people. He has worked for the same company for 38 years and always thought his insurance would be there when he needed it for either of us. We are currently trying to figure out a way to finance this procedure out of our pockets. BCBSNJ needs to update their coverage! Please sign my petition and share it. Ovarian Cancer is a devastating disease, but there are procedures that can eradicate it. Insurance companies should be in business to help save lives – not condemn women to a death sentence because of outdated policies! PLEASE SHARE ....... GET THE WORD OUT AGAINST THESE INSURANCE COMPANY'S.... Thank you! My friend Joyce started a Fundraiser to help pay for the HIPEC part of the surgery that the insurance wont cover ($35,000). Here is the link. Any thing will help and thank you for sharing this and if you helped with the Fundraiser. https://www.gofundme.com/lifesaving-surgery-for-janine-may
Petition to Kemp Hannon, Senator Valesky
Require Doctors in NY to Treat Chronic Lyme Disease
Patients in NY State with Chronic Lyme Disease need access to antibiotic treatment. In 2014, treating Chronic Lyme officially became legal in NY State. However, few doctors in NY are willing to treat Chronic Lyme because treating it is not considered the Standard of Care. The former attorney general of Connecticut, Richard Blumenthal, found that the Standard of Care was developed by the Infectious Diseases Society of America in violation of the Sherman Antitrust Act. However, doctors and insurance companies continue to cite the standard as reason to deny the long-term antibiotic treatment that patients with Chronic Lyme need to get better. Just like doctors are required to treat bronchitis, doctors should be required to treat any patient with antibiotics who has symptoms of Chronic Lyme Disease. Please sign this petition to NY Senators Hannon (Chair of the Health Committee), and Valesky (Vice Chair of the Health Committee), to sponsor a bill establishing the treatment of Chronic Lyme as the Standard Of Care, which will require doctors in NY to treat Chronic Lyme Disease.
Petition to Department of Veterans Affairs
Help Veteran with Cancer Caused by Serving our Country Receive VA Benefits
Our family friend, Dan Parks, is a U.S. Navy veteran that fought throat cancer. He was discharged from the military, partially, to end his exposure to ionizing radiation during his work in a weapons and ammunition facility. The Department of Veterans Affairs (VA) is denying his claim for disability benefits – despite letters from the VA’s own doctors stating that Dan’s exposure likely caused his cancer. Dan needs your help to get the VA to change their decision before it’s too late. Dan was stationed at Naval Submarine Base New London, where he worked with ordinance. During his time at the base, he was also exposed to ionized radiation. Fast-forward a few decades later and has Dan suffered from throat cancer. He now has to plug a hole in his throat to talk; a side effect of the cancer. Dan’s discharge paperwork from the Navy includes a stamp saying he was being discharged, in part, due to the radiation exposure. Multiple doctors with the VA have written letters saying there is a better than even chance that the cancer was caused by Dan’s radiation exposure during his time in the Navy. But the VA has denied his disability claim. The reason? They say there’s no proof he was exposed to radiation in the Navy. As Dan says, “If the VA won’t accept their own doctors, where does a veteran turn?” Dan’s been fighting for benefits for three years. He filed an appeal, but the VA won’t review it for another 18 months. Time is running out. He needs access to life-saving treatment before it’s too late. Please sign this petition calling on the VA to accept their own doctors’ assessments and grant Dan Parks needed health benefits due to the radiation exposure he endured while serving our country.
Petition to President of the United States, US Senate, US House of Representatives, NIDA, SAMSHA
Insurance coverage for all medications used in medication assisted recovery for addiction.
Thousands of people overdose in the US daily. Many do not survive. There are available treatments for substance use disorders such as methadone and suboxone, which have excellent outcomes. However, in many states, these medications and clinic required counseling are not covered by private insurance or Medicare or Medicaid. These are lifesaving medications and ability to afford them should not be a barrier to obtaining them. On these medications quality of life for the user and everyone around them improves.