Ohio | Diabetes, ATTR amyloidosis

Henry’s Story

My name is Henry Kracker, an 84 year old from Mansfield, Ohio. I am a retired children’s services agency director, living with diabetes for about 35 years and ATTR amyloidosis since July 2021, a rare progressive disease characterized by abnormal buildup of amyloid deposits in the body’s organs and tissues. 

I take a range of prescription drugs to manage my health, ranging from Eliquis, Jardiance, Hydralazine, Losartan, Atorvastatin, Torsemide, two kinds of insulin and a drug called Vyndamax for my ATTR. Vyndamax alone has a monthly list price of more than $20,000 and I am currently paying an average of $1,427 per month out-of-pocket ($17,124 annually). My Jardiance and Eliquis have list prices of $593.30 and  $560.75 a month which add another $1,100 to my out-of-pocket costs. Add in my insurance premiums of $6,000 plus and I’ll have an annual out-of-pocket cost of $24,224 for 2023. This is near 25% of my annual income. A cost I realize I can afford more comfortably than most. 

No patient should have to navigate this broken system – drug prices should be lower and fairer.

Fortunately enough, I can financially withstand my high medical costs, but there is nothing normal about paying thousands of dollars annually, for drugs that are meant to be life-saving or stabilizing. Even though I can afford my prescription drug prices at the moment, I believe that what I and many more people in different situations are being charged is completely outrageous. The tangible idea of affordable prescription drugs and lower drug prices is an idea about fairness. With profit levels well into the billions, something is very wrong here. The lack of concern these drug companies seem to have over this ongoing problem is alarming. 

Though it is still a work in progress, there is one step closer to affordable prescription drug prices for patients on Medicare, like me. Finding out that Eliquis and Jardiance are two of 10 drugs selected for drug price negotiations gives me some comfort, knowing that somewhere down the line, these two drugs will have lower list prices which will translate into savings from my out-of-pocket costs. 

Lower prescription drug prices are needed now. It is time to stop Big Pharma from their corporate greed.

Welcome to the Week in Review.

1.  Senators Celebrate Drug Price Reforms With Patients 

 2.  Medicare Negotiation: A Monumental Step For Patients

3. Momentum For Reforming Our Patent And Regulatory Systems

Have a great weekend! 

Image

Welcome to the Week in Review.

1.  A Big Win For Medicare Negotiation 

 2.  Push For Competition To Lower Drug Prices

3. Patients Need Affordable Vaccines

Have a great weekend! 

WASHINGTON, D.C. — The following statement was issued by Merith Basey, executive director of Patients For Affordable Drugs Now, following the announcement by the Centers for Medicare and Medicaid Services (CMS) that all of the drug companies making the 10 drugs selected for the first round of negotiations have agreed to enter negotiations with Medicare: 

“On behalf of patients across the country, we are very pleased to see all of the drug companies manufacturing the ten selected drugs have agreed to enter negotiations with Medicare. This marks an important milestone in our movement – for the first time ever, Medicare will now officially be in the process of negotiating lower prices for essential and costly medications taken by millions of people in this country including cancer treatments, blood thinners, autoimmune disease treatments, and some diabetes drugs. 

“People in the United States overwhelmingly support this law, and we look forward to continuing to work with the Centers for Medicare and Medicaid Services (CMS) and the Department of Health and Human Services (HHS) to ensure the Inflation Reduction Act is implemented in the best interest of patients, despite opposition from drug companies. 

“These first 10 drugs are just the beginning – we will continue pushing on all fronts to lower drug prices for everyone.”

###

Background:

Image

Welcome to the Week in Review.

1.  A Big Win For Medicare Negotiation 

 2.  Time To Stop Big Pharma Patent Abuses

3. Sickle Cell Awareness & The Looming Question Of High Launch Prices 

BONUS WATCH: Check out P4AD’s Bilingual Organizer & Program Assistant Jesse Aguirre celebrate National Hispanic Heritage Month in this new video! Worth a watch.

Have a great weekend! 

WASHINGTON, D.C. — The following statement was issued today by David Mitchell, cancer patient and founder of Patients For Affordable Drugs Now, in response to the decision in the U.S. District Court for the Southern District of Ohio Western Division denying the Chamber of Commerce request for a temporary injunction to stop Medicare from negotiating lower prices for prescription drugs: 

“Today’s court ruling is an important victory for patients and all Americans, and demonstrates the weakness of the industry’s objections to Medicare negotiation to lower prescription drug prices under the Inflation Reduction Act. This is the first decision in the eight challenges that have been filed against the new law, and it sends a strong signal that drug companies and their trade associations will not prevail. Rather, the will of Americans expressed through the Congress will carry the day when all the legal arguments have been heard.”

###

Image

Welcome to the Week in Review.

1.  New Poll: Americans Oppose Big Pharma’s Assault On Medicare Negotiation 

 2.  Medicare Negotiation Restores Fairness

3. The Inflation Reduction Act: A Clear Win For Patients 

Have a great weekend! 

My name is Doug Lusty and I was born and raised in Salt Lake City and am now a longtime resident of Kaysville, Utah. For more than half of my life, I spent my professional career as an auditor for the state. 

Today, I am fully retired at 60 years of age. But retiring in 2018 was no easy choice. For many years, I struggled with gastrointestinal issues and was misdiagnosed for about 15 to 20 years of my life. The doctors always told me I had irritable bowel syndrome (IBS), but I knew that was simply not the case. 

Finally, in 2010, an emergency room visit changed my life forever. I ended up in the hospital for a bowel obstruction, where for the first time in my life a doctor decided to perform an abdominal CT scan which led to a correct diagnosis of Crohn’s disease. I was immediately referred to a gastrointestinal specialist (GI) who to this day has been great to me and given me the healthcare that I’ve needed badly. As recommended by this GI specialist, I underwent colon/rectal surgery in October of 2010, where 3 ½ feet of my small intestine and ½ a foot of my colon were removed. Then in 2018, I was diagnosed with diabetes – which has been the more manageable condition thus far. 

Over the span of 13 years since my surgery, I have been put on a range of four biologic drugs meant to treat my Crohn’s disease and help me adjust to my new normal. I spent five years taking Humira, a TNF suppressor medication designed to stop tumor necrosis factor-ɑ or TNF from attacking healthy cells, which had a good effect on me until my body developed antibodies to it. I then spent four years on Entyvio, which never worked quite as well as Humira. Then for about three months I took Renflexis, which failed me immediately. I then fought my insurance to cover the next medicine I was prescribed: Stelara, where the copay per each injection was $2,641.09 every eight weeks.

I felt it was impossible for me to cover this expense. I needed Stelara to control the inflammation in my guts, so this is where my fight for affordable medications started. Stelara was far too expensive for my insurance to cover it until I qualified for its copay assistance program I am on now, where I only pay $10 per injection. But in a few years, I will have to make the move from private insurance with copay assistance to Medicare, where Stelara costs will impact me again. Despite being on Stelara at an affordable price now, my new normal has changed my life dramatically – most of my day is now spent on several runs to the bathroom, many of which are painful, and my wife and I worrying about our financial stability. 

My wife, Sandy, also has medical issues of her own. She is on numerous prescriptions. She is currently on Medicare and does not qualify for co-pay assistance plans like I do. Between Sandy and me, we are currently on five of the medicines that were announced eligible for Medicare to negotiate lower prices for. Sandy is on Entresto, Emgality, and Farxiga. I am on Stelara and Jardiance. Our total out of pocket costs for these five drugs are in the thousands of dollars. 

High cost drugs are truly a challenge we must overturn. By making prescription drugs more affordable for patients, patients like me could feel a sense of relief we have missed for so long.