Health Care

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 relationships 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 or immune suppression medications every 12 hours to prevent his body's immune system from fighting off his transplanted liver. In the past mail-order pharmacy delivered his liquid oral medications in nothing but a plastic envelope on a 102-degree day on a hot enclosed non-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 or 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. I now know that the hot non-temperature controlled enclosed delivery truck and mailboxes can reach temperatures up to 120-170 degrees. His labs elevated again afterward. My son wants to know, "Why would they do that?" I contacted the manufacturer, who performs the testing, who informed me 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.  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. 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 an appeal and 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 relationships 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 a 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/

I started taking insulin in 1974 when I was diagnosed with type 1 diabetes at age 11.  I started using NPH and Regular insulin that worked well in the 1970's.  Over the years, better, more effective insulin came to market.  Unfortunately, they also cost more.  Last year, I lost my health insurance for a short time that covered my Humalog insulin that I used in my insulin pump.  I resorted back to using NPH and Regular for a while, but I could not use it in my insulin pump.  Humalog cost retail about $200.00 a bottle that I could not afford.  I used NPH and Regular for a while.  Using older NPH and Regular insulin from the seventies is like listening to music on a scratchy vinyl record album.  You can hear the music, but it is not as good as listening to music on your MP3 player. Insulin isn’t just a drug. It’s the difference between life and death for millions of people with diabetes – and it’s something they will need every day for the rest of their lives. When you or someone you love needs insulin and cannot afford it, the choices are scary. With the average price of insulin skyrocketing in recent years – nearly tripling between 2002 and 2013 – more and more of our family members, our friends, our neighbors and ourselves are faced with tough choices to pay for this lifesaving drug. Insulin is not a luxury drug. It’s not optional. It’s something we need, and the prices just keep going up. There’s a lot of support in the diabetes community, but at the end of the day you’re still the one living with it and it’s your life that’s at stake. That’s scary.” We demand all entities in the insulin supply chain that we need transparency, affordability and access, and that no one who relies on insulin should have to wonder if they’ll be able to afford it, and;We want Congress to hold hearings to identify the reasons for the dramatic increases in insulin prices and to take action to ensure all people who need insulin have affordable access to this lifesaving medication. This is unacceptable. It’s time to stand together and call for change.  

By signing this petition, you are literally saving Zahra’s life.  Zahra, a 6 years old girl, has been diagnosed with a rare disease called Spinal Muscular Atrophy ("SMA"), which is a terminal, degenerative disease, that takes away a child’s ability to walk, stand, sit, eat, breathe, and even swallow.  HOWEVER, a new medication, SPINRAZA™ (nusinersen), not only can stop the disease, it will restore the previous degeneration. Unfortunately, Spinraza is VERY expensive, costing $750,000 USD! Zahra's story published on the Wall Street Journal:  https://on.wsj.com/2FMo3PA All you have to do in order to help Zahra is to simply sign this petition requesting Biogen, the company which makes SPINRAZA™, to ease Zahra's access to this medication by either reducing the price or any other way possible to save her life. Please follow Zahra on Twitter:  https://twitter.com/SaveZahraD #SaveZahra Dear Biogen company, please gift Zahra the compassionate use of SPINRAZA™ (nusinersen) or at lower prices before it is too late. Please support Zahra's family so that this little girl can start her treatment as soon as possible. No kid in this world deserves to be left to gradually or eventually die. Please help saving Zahra's life.    

I am a Type 1 diabetic and I have been since 1994. Just a couple of years ago the cost for a 3-month supply of Novolog insulin, which I have to inject every time I eat, was $100. Now, a 1-month supply costs $458.77 and there is no discount for a 3-month supply, meaning I would have to pay almost $1,500 for a 3-month supply -- about $6,000 a year for just one type of insulin. However, pricing elsewhere shows that this high cost is not necessary. Canada’s price for insulin is $90, and Colorado recently passed an insulin price cap of $100 per month. It's time for Florida to join Colorado in passing a price cap on this life-saving drug. Type 1 diabetes, which according to the CDC accounts for about 5 percent of all diagnosed cases of diabetes, is an autoimmune condition in which the body attacks and destroys the insulin-producing beta cells of the pancreas. Because their bodies cannot make insulin, type 1 diabetics require insulin prescriptions to live (in some extreme cases this is true for type 2 patients as well).  "When type 1 diabetics take less insulin than they need, at the expense of having higher blood sugars… glucose rises significantly and in an attempt to find alternate fuels for the brain, keto acids are formed which are potentially toxic and lower the body's pH. DKA (Diabetic Ketoacidosis), when left untreated, can be lethal, and can set in quickly. In the absence of insulin a person might get DKA within 24 hours," - Robert A. Gabbay, the Chief Medical Officer and Senior Vice President at Joslin Diabetes Center in Boston. The price of insulin has skyrocketed in recent years, with the three manufacturers — Sanofi, Novo Nordisk and Eli Lilly — raising the list prices of their products in near lock step, prompting outcry from patient groups and doctors who have pointed out that the rising prices appear to have little to do with increased production costs. In the United States, just three pharmaceutical giants hold patents that allow them to manufacture insulin: Eli Lilly, Sanofi and Novo Nordisk. Put together, the “big three” made more than $12 billion in profits in 2014, with insulin accounting for a large portion. Because of the incredibly high cost of insulin and other expensive supplies to handle their diabetes, many diabetics are forced into dire situations. Many diabetics have resorted to rationing insulin, risking their lives every day because they can’t afford to pay for their next vial. People are forced to choose between the insulin they need to survive, and keeping a roof over their head and food on the table for their families. People’s lives shouldn’t be put at risk because the insulin they require to live isn’t deemed “necessary” by insurance. The insulin price cap in Colorado has shown that it’s possible for states to take control of outrageous insulin pricing and as a result, to save lives. It’s time for Florida to join them in protecting Floridians with diabetes from avoidable health risks. I urge you to look into the legislation that Colorado passed as a potential example for Florida to follow.