My name is Karen Macedon and I’m a longtime resident of Sacramento, California, a mom to three and grandmom to seven , and a waitress. I At 58, I’m looking forward to retiring in the future and spending more time with my family —perhaps going on a cruise or two, as I love to travel.
I live with asthma, allergies, and type 2 diabetes, and my drug costs are standing in the way of leading a full life.
My doctor thought that Symbicort would be the best medication to manage multiple breathing conditions, but my insurer refused to cover it –– and I learned, standing at the pharmacy counter, that it would cost $200. I realized then that I would never be able to get the drug I needed and suffered without it for a time. Suddenly, I learned it was covered again. I don’t know how long this will last, and I hope every day I won’t get another shock at the pharmacy counter.
Doctors prescribed bydureon for my diabetes. Conveniently, it is a once-weekly injection. Because my insurance wouldn’t cover it at all I have to wait on samples from my doctor. I’m grateful for the samples, but I wish I wasn’t forced to depend on them. I would not be able to take this medication if I had to pay for it myself, it is simply too expensive. I was recently given a coupon to get a discounted rate and four vials for free, but I am still worried about when those vials run out. It’s all a guessing game.
My health care costs add up. I have to get needles for my Lantus insulin; I have copays to see my specialty doctors. And then I am faced with high drug prices. I just want to be able to enjoy my time and not have trouble breathing or managing my blood sugar. Patients like me deserve better.
My name is Marta Brodsky and I live in Northern California. I have a rare autoimmune condition called Lambert-Eaton Myasthenic Syndrome (LEMS) and I volunteer my time as an advocate around this issue.
I’m also an assistant coach for high school cross country each fall, a job I love. My condition can rob me of the ability to move, but with medication, I am still able to work.
But because of my drug prices, I may have to stop working completely.
I was properly diagnosed in 2008 and then began taking a miracle drug –– provided at no charge by Jacobus Pharmaceuticals –– called 3,4-DAP. I had been taking 10 tablets (or 100mg) the entire time. But since February of this year, I and my fellow LEMS sufferers in the U.S. have been forced to stop taking 3,4-DAP and start taking another drug called Firdapse, manufactured by Catalyst Pharmaceuticals. Catalyst charges $375,000 per year, per patient for 60 mg per day.
I have private health insurance which has covered up to 80 mg per day of Firdapse — but I need 100 mg, at least. My doctor wrote prescriptions for 100 mg per day and submitted to Catalyst. My insurance company denied coverage of the extra 20 mg per day, and has recently denied my doctor’s appeal of that denial. A Catalyst representative told me a one month supply of two additional pills per day (60 total) would cost me between $5,000 to $7,000. This is not an option for me, as that is financially out of reach.
I am currently taking about 90 mg per day, cutting back when possible (when I can lay around and not really move). As you can imagine, I have had to rearrange my life and schedule to accommodate for the reduced medication and my consequent weakness.
In my position as assistant coach, I’m not able to do much except support the head coach, administratively and logistically, and encourage the student/athletes. I cannot run or train with them. With this new, less-effective drug, Firdapse, and the reduced amount of it to boot, I will not be able to continue coaching this year at all.
If I were able to afford the medication, I would have a much better quality of life. I would be able to participate in activities I love, including coaching students from my community that has given me so much.
Californians deserve better. Patients should not be forced to ration their necessary medications, as I have to do. I urge the California legislature to look at my story and see that Californians like me are suffering under the high cost of medication. I urge my representatives to vote in favor of AB 824, which would be a meaningful step in lowering health care costs for their constituents.
SACRAMENTO — A California grandmother plans to stand up to Big Pharma at a state senate hearing Wednesday, sharing her story about unaffordable prescription drugs and speaking in favor of AB 824 — a first-in-nation bill that would end a drug company tactic used to block lower-priced generic competition.
Karen Macedon, a Sacramento waitress who lives with asthma and type 2 diabetes, will tell the Senate Health Committee, “Not a day goes by when I don’t think about the impact these conditions have on my life and the growing burden of paying for the medications that treat them.”
Karen’s diabetes medication costs more than $800 a month. There is no generic option.
AB 824, legislation introduced by Assemblymember Jim Wood (D-Santa Rosa) and sponsored by state Attorney General Xavier Becerra, would make illegal a Big Pharma scheme called “pay-for-delay,” in which a brand drug maker pays a generic manufacturer not to bring a competitive product to market, driving big drug company profits and hurting patients waiting for less-expensive prescription drugs.
Macedon’s testimony will be delivered on Wednesday, July 3 before the Senate Health Committee at 1:30 PM.
Key points from Karen Macedon’s prepared remarks:
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SACRAMENTO, Calif. — A groundbreaking bill to lower prescription drug prices will move to the full Assembly floor. Assembly Bill 824 would stop Big Pharma from cutting deals that block less-expensive generic drugs for state residents — a tactic that limits patient choice and costs taxpayers billions each year.
AB 824 would:
“California residents have been speaking out in support of the state’s effort to stop Big Pharma from cutting anti-competitive deals that keep drug prices high,” said Juliana Keeping, Communications Director for Patients For Affordable Drugs Now. “Thanks to a dirty tactic called ‘pay-for-delay,’ drug corporations are allowed to pay off generic competitors in an effort to maintain their monopoly and increase prices for patients. California patients have had enough and are sending a simple message: Drugs don’t work if people can’t afford them.”
Here’s what California patients speaking out about the need to lower drug prices have to say:
Dorothy Nerli, Willows, CA: “I find I am faced with increased costs, like the time my Spiriva went up to $129. Spiriva helps to clear my airways, clearing out my lungs in order to make my breathing easier. I have scar tissue in my lungs due to several bouts of pneumonia. This is a horrible case of greed on the part of the manufacturers, who should lower the price of these medications. It shouldn’t cost seniors their rent or a healthy diet in order to be able to breathe.”
Elizabeth Reinboldi, Vacaville, CA: “If I weren’t able to get my medication, it would be a great detriment to my quality of life. I love to be involved with my church and volunteer as much as possible. I wouldn’t be able to do these things if I couldn’t get my medicine, or if the price goes up at all. I simply wouldn’t be able to walk due to the pain. We need lower drug prices as soon as possible.”
Sharon Fisher, Rio Vista, CA: “Because of the high price, my doctor put me on a cheaper drug: Tramadol. It does not work as well as the Lidocaine. I don’t get to do any of the activities that I used to love. I miss going to the gym and leading an active lifestyle, but my pain is simply too severe. Too many seniors have to go without medicine due to high out of pocket costs. Something needs to change –– and soon.”
Patients For Affordable Drugs Now is a Washington, DC-based patient advocacy organization that takes no money from the pharmaceutical industry or any other player in health care. As part of its ongoing campaign in support of the California legislation, Patients For Affordable Drugs Now:
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My name is Sharon Fisher and I am a 68-year-old longtime resident of Rio Vista, California. I am now retired, and do my best to enjoy my days as best as I can. I used to love going to the gym and lifting or going on long walks, but in the past years I’ve been homebound.
I have dealt with chronic pain for many years and have tried many different remedies. My doctor has prescribed me a number of different medications, but the most helpful were Lidocaine pain patches. These were remarkable, and helped mitigate my pain immensely. However, it was only when I went to pick up my prescription at the pharmacy counter that I found out from my pharmacist that Medicare was not going to cover the patches. The price was just too high.
I asked how much it would cost me, and was told that it would be $600 per month. I was taken aback. I cannot pay for this prescription. I am retired and on a fixed income. With the other medications I take, there is absolutely no possibility of paying for it.
Because of the high price, my doctor put me on a cheaper drug: Tramadol. It does not work as well as the Lidocaine. I don’t get to do any of the activities that I used to love. I miss going to the gym and leading an active lifestyle, but my pain is simply too severe.
Too many seniors have to go without medicine due to high out of pocket costs. Something needs to change –– and soon.
My name is Dorothy Nerli and I am a resident of Willows, California. I was born here and attended local schools, and have lived and worked in various locations since then. But in 2001 I returned to this small city because I love this community and my family is here.
At age 85, I found that I need two inhalers to assist me in breathing. ProAir alone has a co-pay of $65, and the other inhaler, Spiriva, is $95. I retired with insurance, so I am currently free from the terror many experience when trying to pay for their medications. However, I am quite concerned for other senior citizens.
I take Spiriva most frequently, as it is the most helpful to me. I also take ProAir every four hours as a supplement. Occasionally I find I am faced with increased costs, like the time my Spiriva went up to $129. Spiriva helps to clear my airways, clearing out my lungs in order to make my breathing easier. I have scar tissue in my lungs due to several bouts of pneumonia. I need these inhalers, and am thankful that I can currently pay for them.
But I know that there are many other seniors in my community who are facing high costs for their inhalers and who cannot afford them. This is a horrible case of greed on the part of the manufacturers, who should lower the price of these medications. It shouldn’t cost seniors their rent or a healthy diet in order to be able to breathe.
SACRAMENTO, Calif. — A first-in-the-nation California bill would stop Big Pharma from cutting deals that block less-expensive generic drugs for state residents — a tactic that limits patient choice and costs taxpayers billions each year. Californians have written hundreds of letters in support of Assembly Bill 824, which is being heard in the judiciary committee this week. The bill also received an endorsement today from Patients For Affordable Drugs Now, a Washington, DC-based patient advocacy organization that takes no money from the pharmaceutical industry or any other player in health care. The organization launched a 5-figure campaign to advance the bill.
“Big Pharma is reaching into the pockets of hard-working Californians through dirty tactics like pay-for-delay deals that block cheaper generic drugs,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs Now. “We’ve heard from more than 1,000 Californians who report struggling to afford skyrocketing prescription drugs. All the while, Big Pharma’s profit margins are soaring while players collude to cut monopolistic deals. AB 824 could put an end to this egregious scheme that’s gone unchecked for far too long.”
AB 824 would:
Patients For Affordable Drugs Now’s 5-figure campaign includes digital ads to give Californians tools to contact their representatives in support of the legislation through letter writing and phone calls.
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