Topic

Health Care

400 petitions

Update posted 18 hours ago

Petition to U.S. Senate, Dan Brown, Kathy J. Byron, Lee Ware, Mike Cunningham, Timothy Hugo, Bill Eigel, Jason Holsman, Daniel Marshall, III, Jacob W Hummel, Robert B. Bell, Israel D. O'Quinn, Jamilah Nasheed, Bob Onder, Ron Richard, David E. Yancey, John Joseph Rizzo, Caleb Rowden, Margaret B. Ransone, Dave Schatz, Scott Sifton, Wayne Wallingford, Michael J. Webert, Paul Wieland, Tony O. Wilt, Christopher T. Head, Jeion A. Ward, Mark L. Keam, Eileen Filler-Corn, Kaye Kory, Joseph C. Lindsey, Lamont Bagby, David J. Toscano, Steve E. Heretick, Michael P. Mullin, Jeffrey M. Bourne, President of the United States, Maria Chappelle-Nadal, U.S. House of Representatives

Stop Forcing Mail-Order Pharmacy as the Only Option of Coverage

Patients' lives depend on choice. **Since starting the petition, I have realized that there are many issues other than temperatures with forced mail-order pharmacy.  Mail-order pharmacy is very loosely regulated. There are life-threatening delays, lack of face-to-face relationship with pharmacists for people with chronic conditions, and rapid closures of our independent pharmacies; although, a recent study showed people prefer independent pharmacy (2018, Gill).    *************Our Story************* Our son, received a life-saving liver transplant at the age of 2 from a 3-year-old little girl. His life depends on the potency and effectiveness of chemotherapy/immune suppression medications every 12 hours to prevent his body's immune system from fighting off his transplanted liver. In the past mail-order delivered his liquid oral medications in nothing but a plastic envelope on a 102-degree day on a hot enclosed not temperature controlled UPS truck. Shortly after, he went into liver rejection which could have resulted in complete liver failure or death. I speculated that the medication could have been too weak after the delivery of medications in high heat. I vowed to never again risk his life with mail-order pharmacy. Recently, we were mandated/forced to only use mail-order pharmacy in order to receive coverage for his life-saving medications.  The package arrived in only a bag on a hot day without an ice pack. The hot non-temperature controlled enclosed delivery truck can reach temperatures up to 170 degrees. His labs elevated again afterward. My son wants to know, "Why would they do that?" I contacted the manufacturer, who performs the testing stated that both of my son's medications should be discarded and considered less potent once stored above 86 degrees as higher temperatures and freezing could both result in lower potency. Liquid medication is the most harmed by the mishandling of medications outside of the manufactures temperature storage guidelines.  I contacted the mail-order pharmacy who refused to replace or take back the medication. They said the law & USP Pharmacopoeia allows them to ship up to 104 degrees, although the manufacturer states it is not proven safe at these temperatures. However, I have received communication from USP Pharmacopoeia who writes guidelines for storage, and they also said that the mail order pharmacy should follow the manufacturer's guidelines of 59-86 degrees for storage. Again, the trucks reach up to 170 degrees which is much hotter than 104.  I contacted the FDA, who states that the mail order pharmacy should be using the manufacturer's guidelines that have been proven safe..However, since the mail-order pharmacies are regulated loosely by the State Board of Pharmacy, not the FDA. There was nothing that the FDA could do.  I made over 30 calls to the insurance company begging for them to please let us pick my son's medications up at the local pharmacy at which they are filled. My son's physician wrote a note/appeal as his transplant team has stated that they have tried to voice their concerns about this issue with their pediatric/child patients and no one is listening! The insurance company still denied the doctor's appeal for us to pick up my son's medications in the safest way. It was not until the Media became evolved that the insurance company budged.  I felt helpless and have united with many other pharmacists, physicians, patients, mothers and fathers, and caregivers who feel the same way. Helpless. Mail-order of prescription drugs should be a choice, not the only option of coverage.  Mail-order pharmacies may appear to save money, but when my son ended up in the hospital after taking medications that could have been compromised by having lower potency, the cost of the rejection was thousands of dollars. If his liver would have fully failed, the cost of his liver transplant for just 5 days (he was in the hospital for 5 weeks) was over $1,000,000. The lax regulation and oversight may save money on prescription drug plans but may come at an increased cost to the health plan itself. Also, keep in mind the endless waste of medications that automatically are sent regardless of whether or not patients need them. Also, people with chronic, complex conditions, should always have the option of face to face interaction with a pharmacist who knows their complex needs and medical history. The pharmacist and patient relationship are crucial to the successful outcome of the patient's overall health. Taking this away is harmful to patients and be more costly to our already stressed healthcare system.   Only allowing mail-order pharmacy for coverage is unethical and irresponsible. I share stories on my social media sites every day of patients who are suffering from lack of choice.  We need your help to make mandatory mail-order an option, not a mandate.  YOUR URGENT SUPPORT WILL SAVE LIVES! THANK YOU!! WE APPRECIATE ALL OF THE SUPPORTERS, CAREGIVERS, & PATIENTS.  Thank you,  Loretta Boesing, Founder of Unite for Safe Medications You may make a tax-deductible contribution to support our advocacy here Email: loretta@uniteforsafemeds.com Facebook Page: Issues with Mail Order Pharmacy @justamomwholovesherson Twitter: @BoesingLoretta The greatest way that you can help is by sharing this petition & gathering 2-3 people in your community who are having issues and speak to your legislatures.                  Reference: Gill, Lisa L. “Consumers Still Prefer Independent Pharmacies, CR's Ratings Show.” Product Reviews and Ratings - Consumer Reports, 7 Dec. 2018, www.consumerreports.org/pharmacies/consumers-still-prefer-independent-pharmacies-consumer-reports-ratings-show/

Loretta Boesing
162,308 supporters
Update posted 1 week ago

Petition to 23andMe , Anne Wojcicki, Esther Dyson

Expand 23andMe health testing to cover HHT

A simple DNA test can help our friends and families live longer! HHT is a genetic disorder that causes abnormal blood vessel formation that results in nosebleeds, aneurysms, hemoptysis (coughing up blood), and more. The abnormal blood vessels can happen in the brain, heart, liver, on the skin, or anywhere in the body, and can sometimes instantly kill a person when the vessel pops. Each child of a carrier has a 50% chance of receiving the gene and therefore developing HHT. This petition is to request 23andMe to expand its health testing to cover HHT. 23andMe already tests for health conditions when it runs its DNA tests and expanding its health tests to include HHT will positively impact so many lives. Increased awareness and an earlier diagnosis will allow individuals to get proper care. HHT often goes undiagnosed because the fatigue, nosebleeds, headaches, digestive bleeding and other symptoms are regularly misdiagnosed as other conditions and many doctors are not well informed of HHT. Thus, HHT is known to be underdiagnosed and it's difficult to determine the true frequency of HHT in the population. Yet, genetic testing has shown to identify HHT accurately. 23andMe uses microarray genotyping but with the decreased cost of superior NGS chips and competition from Veritas Genetics, it is time for 23andMe to upgrade its chips again to include more complete genome sequencing allowing for HHT detection. 23andMe profits from customers, researchers, and pharmaceutical companies. The cost of more complete genome sequencing benefits all three components and upgrading the genetics chips is still profitable for the company. 23andMe offering HHT testing will make it the only company to offer direct-to-consumer testing and especially to those without health insurance. Furthermore, the genetics around HHT already have a good foundational knowledge base making the test seamless for the company to integrate. This is a win for everyone. Help save lives, sign this petition :) Resources: https://curehht.org/understanding-hht/diagnosis-treatment/genetic-testing-hht/https://www.23andme.com/

Kevin C
624 supporters