Comments From Readers
Comments and letters from you, our readers.
PUBLISHED December 14, 2015
Cap Patient Drug Expenses
Your article on setting prices for cancer drugs, in the Legislative Watch section of FirstLine (summer 2015), was the first I’ve read in your magazine on this subject.
It is critically important to get your readers and the legislature aware that, unlike chemotherapy that is covered under major medical with out-of-pocket costs to patients that is very reasonable, cancer drugs are covered under Rx plans. This results in extremely high costs for cancer patients, adding to the stress and anxiety of treating the disease. Medicare Part D, as well as other independent Rx insurance plans, only cover a portion, and the resultant costs can devastate savings. Some drugs are $5,000 to $9,000 for a 30-day supply!
Negotiating better costs from the drug companies is a step in the right direction. However, a better solution is to redesign Rx plans to account for the multitude of new cancer drugs coming out and the new way we are treating cancers today. There needs to be a reasonable cap on out-ofpocket expenses for patients, instituted by the state and federal government.
AYA Cancer Programs Vital
Thank you for your article “Their Generation,” on adolescent and young-adult cancers. There is not enough awareness, research or funding focused around cancer in young people.
I was diagnosed with leukemia at 16, and underwent chemotherapy for 2 1/2 years. My friends were there for me, and then the ones I had been closest with vanished. There was a teen group at the hospital I really enjoyed, but most of them had been through treatment years before. There were not many teens I was able to find going through treatment at the same time I was (or who had recently finished). I was looking for more people to just talk with who could relate to me, or at least know how to listen when I needed to talk about something.
Controlled and Peaceful Ending
I just read two comments that were made regarding assisted suicide in your summer 2015 issue that I feel I need to comment on myself.
I was diagnosed in 2011 with a rare cancer, primary peritoneal carcinoma, which is known to come back often. I am currently receiving chemo for my third recurrence.
I recently composed a letter and sent it to our state representatives asking them to sponsor legislation that makes the medical practice of aid in dying accessible for the people of our state of Iowa. People should have the right to choose. Aid in dying is not a choice of death or life. It is an option for those who are dying that spares them unbearable suffering and offers a controlled and peaceful ending. All dying people deserve that option and the tremendous peace of mind that comes with it.
I believe that our rights and freedoms are ours to exercise until we take our last breath, and having a terminal illness doesn’t change that. To keep someone alive against their wishes is the ultimate indignity.
Just like we have the right to vote, no one makes you do it, but at least you can. We all deserve tranquility and choice at the end of our lives.
Lori K. Gibbs
Cover Clinical Trials
Regarding your article on clinical trials in the spring 2015 edition, one of the barriers to patient enrollment is that some insurance carriers will not pay for services received as part of a trial.
I was diagnosed with unresectable pancreatic cancer and offered a place in a clinical trial of stereotactic radiation. Even though the course of treatment in the trial was less expensive and involved less time off from work than conventional radiation, it was denied by my insurance as it was not the “standard of care.” Since the current standard treatments for pancreatic cancer result in a five-year survival rate of only 7 percent, it is shameful that my insurance carrier felt that this was good enough. Good enough for them, maybe, but not for me.
With CURE, Not Alone
I wish to thank your magazine for the wonderful, supportive articles on surviving cancer. At the beginning of my cancer treatments, I felt totally alone. Lucky for me, I just happened to stumble onto an old CURE magazine copy at my oncologist’s office. I subscribed immediately and realized that I was not alone. I have since passed it on to others with cancer diagnoses.
Thank you, thank you, thank you!