My name is Sue Lee and I’m a 77-year-old resident of Crestwood, Kentucky. I worked in health insurance for years before I retired and I endured years of painful plaque psoriasis while I was in the workforce.
When I was prescribed Humira, I quickly discovered that it was a “miracle drug” in treating my symptoms. It helped me treat the painful sores on my body that had plagued me for years.
However, I have been forced to stop taking Humira after learning the treatment would cost me over $8,000 a year out-of-pocket. I don’t have too large of a savings account and I live off of the fixed income provided to me by Social Security. I can’t afford to pay for Humira under any circumstances. When I was employed and under employer insurance, my copay was only $5. But with retirement and Medicare came the new, insurmountable price tag.
It just isn’t fair. I do the best I can to maintain my health. I live healthy and try to maintain an active lifestyle. I worked well past retirement and saved as much as I could. Even that couldn’t save me from these extremely high drug prices. These prices are devastating patients all around the country. If Medicare had the ability to negotiate for their beneficiaries, maybe I would be able to afford Humira. I want Medicare to be able to negotiate down the prices of necessary, life-saving drugs to help patients like me.
My name is John Lindemulder and I am a 67-year-old retiree resident of Diamond Bar, California. Los Angeles County is my home; I was born and raised here and I worked to benefit the state for many years.
I was enjoying retirement with my wife up until October 2017, when I received a diagnosis that changed my life. My doctor told me that I had leukemia.
I had been quite healthy up until I received this diagnosis, and it was a great shock to both my family and my finances. But my altered state of health was not the only difficulty I began to face at this time. I also began to be greatly affected by the cost of my chemotherapy and other medications.
I have Humana insurance, but when I first went to pick up my medication, I was shocked at both the cost of the drug and my copay. My insurance was paying out about $1,000 for a month’s supply, and I was paying a $100 copay for each medication. I was stunned. There was no way I would be able to afford this — it was out of the question.
I was forced to look for alternatives, and I found City of Hope, which referred me to a pharmacy that allows me to make payments. I currently owe $1,500 in copays to the pharmacy. I make payments for my medications of $100 a month currently. My life and my budget has been greatly affected; it is really making things tough. I’ve been rationing my medicine and taking less than I should.
I am in disbelief that this is my situation. I want to enjoy my retirement and do things I love, like reading classic literature and spending time with my wife. Instead, I am consumed with worry about our financial health.
Patients like me deserve better. Californians deserve better. I urge my legislators to fight for lower drug prices.
My name is Janice and I am a 62-year-old mother from Concord, California. I love my family dearly. They are my best friends and I hope to God that they will all take care of each other when I’m gone.
But a number of medical conditions have wracked my family — particularly the disease of addiction. Unfortunately, my son deals with substance use disorder. This is a horrible illness that affects him enormously. However, he decided to get sober a while back.
There is a program through the county that gives him rehabilitation and allows him to see other people going through the same difficulties. They also prescribed a medication that would help ease him off of opiates, and that would make recovery much more likely.
I am lucky to have Medicare. But my son needed medicine and I paid for it out-of-pocket until he become eligible for Medi-Cal. The Suboxone cost over $60 a week, even with a discount. I took out a loan in order to help pay for the medication, and over time I’ve taken out over $1,000 in loans to help him.
He’s now covered under Medi-Cal and he receives the medication at a much lower cost, but we both maintain that it is wrong and cruel to price a lifesaving drug like Suboxone at $60 a week. Many people can’t afford that. Patients like my son deserve better. I’m still paying off loans that I took out, and I’m still shocked that I had to take out those loans in order for him to get the medication he needed.
I am raising my voice and sharing my story because Californians deserve better. They deserve easier access to medications, and AB 824 would be a great start that would benefit so many people affected by the high cost of medications.
My name is Nilton Leon, and I am a hardworking father from Santa Ana, California. I also have type 2 diabetes, an illness I was diagnosed with in 2010. It has caused me great hardship in my life and has greatly affected my finances as well.
My doctor and I tried out various insulins and treatments, and we ended up landing on a routine that worked for me. I was prescribed Lantus, Lisinopril, Atorvastatin, Victoza, and Metformin for my diabetes and high blood pressure. I found that this regimen really transformed my health.
Everything was going well until I suddenly become unemployed. I lost my health insurance at that point, along with my prescription coverage. When I went to fill my medication at my pharmacy, I was shocked to find that the cost had become outrageously high. Suddenly, my Victoza and Metformin were $100 each. There is no way I can afford that.
Because of the high cost, I was forced to stop taking my medicine. I was living off of unemployment, and that barely covered my rent. I just couldn’t pay for my Victoza and Metformin anymore.
My health deteriorated. I got sick. My kidneys started going bad because of my high sugar levels. I lost a ton of weight and began to lose my hair. My energy was so low that I could no longer keep up with my loved ones.
I recently was able to get back on health insurance. I am now paying only $15 per medicine, but the costs still add up and it still takes a good chunk of my budget.
I am glad I no longer have to skip my medications, but I fear for the day that I am unable to pay for them once again. I know I am not the only one who faces these high drug prices. Patients like me shouldn’t have to fear for their health just because they can’t afford their medications. These medications are simply too expensive.
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.
My name is Letitia Jackson and I am a 55-year-old from Weymouth, Massachusetts. I am heavily affected by high drug prices due to my various medical conditions. I have been dealing with emphysema, chronic pain, and depression for many years. These issues are ongoing, so I am constantly returning to the pharmacy to pick up prescriptions.
The ones that have been lifesavers to me are Trazodone, Symbicort, Celexa, and Gabapentin. I take others as well. Although some of my individual copays are low, they do add up. What I end up paying out of pocket takes a huge chunk of the fixed income I make each month.
Because of the high cost of my medications, I sometimes have to do without necessary appointments. I find myself cancelling doctor’s appointments because I realize that I can’t afford the copay to go because I already spent too much on my medications. This also adversely affects my health.
Life is hard sometimes, but it is much more difficult when I have to decide between having my prescribed medication or doing things like seeing my doctors. Patients in Massachusetts shouldn’t be forced to choose between the two. Our health is important and we demand our legislators pass laws that protects us.
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.