Improving quality of life for patients and their families is a top priority for ACS CAN’s advocacy agenda, and advancing policies that expand access to palliative care is an essential component of our work to support cancer patients around the country.
Guest Post: Living with Chronic Pain after Cancer
Today, ACS CAN and the Alliance to Prevent the Abuse of Medicines joined together on Capitol Hill to address the critical need to preserve patient access to pain medications as policymakers work to adopt legislation to curb opioid abuse.
The Hill briefing featured advocates, health care professionals, congressional staff, and patients, including ACS CAN volunteer Evelyn Lopez. Evelyn is a stage 3-4 Hodgkin's lymphoma survivor who depends on opioid medications to manage debilitating side effects from her cancer treatment that left untreated would interfere with daily life. According to the U.S. Centers for Disease Control & Prevention (CDC), opioid abuse impacts more than six million Americans. Understandably, lawmakers are anxious to enact policies that will address the opioid epidemic and decrease abuse and misuse of prescription medications. However, many approaches have been too narrowly focused and ineffective, and have had the unintended consequence of restricting access for the patients who rely on these medications as intended -- to lessen chronic pain.
ACS CAN believes the issue of misuse and abuse of opioids should be addressed in a balanced way that recognizes the need to maintain access for individuals fighting pain from cancer and other serious illnesses that prevent them from working, living independently, and enjoying a productive quality of life. With so much attention to the abuse problem in this country, I've asked Evelyn to share her important perspective on the need for continued access to pain care -- a perspective that is too frequently lost in the ongoing effort to address misuse and abuse.
I was diagnosed with stage 3-4 non-Hodgkin's lymphoma in August 2010. At age 51, the doctors told me the cancer had spread to my jawline, chest, back, hips, and liver. I was immediately treated with chemotherapy for six months, which was soon followed by two months of extreme radiation. After the first round of treatment, I went in for routine scans. Again, my results were grim. The cancer had once again plagued my body. Round two of treatment called for an extreme regimen of a different type of chemo, which included high doses of a steroid. This combination caused massive damage to my bones and joints. My body was left tattered and torn. For me, this was unexpected. I guess I had rarely heard cancer survivors talking about the side effects of their treatment. I thought that once I was in remission, I would be able to function as I did before. This wasn't the case. Sleeping was nearly impossible. Every morning I woke up to extreme chronic pain. On rainy days or when the temperature would change, the pain would be 10 times worse.
My doctor prescribed two medications both of which contain opioids. It was at that moment, I realized that my life would change. Although, I knew I wouldn't be 100 percent due to my chronic pain and the side effects from my cancer treatments, the medications helped be able to function again. I was able to fix myself meals, wash my clothes, and better yet, take showers. While daily hygiene chores may seem like small tasks to some, these were daily triumphs for me.
I'm all too aware of the opioid epidemic in our country. My father was a heroin addict for many years and eventually took his own life. It was a battle he could never overcome. I swore I'd never go down that road. Yet, here I am, praising the relief from my chronic pain these medications have provided me. I try to take lower doses as often as I can. And, I often try other methods for pain relief such as physical therapy, massages, and acupuncture. However, I must note that most of the other methods only provide short-term relief. What gives me the longest relief are my prescribed opioid prescriptions.
These medicines allow me to take care of myself each day, but they also make it possible for me to visit my children and grandchildren who live across the country in Arizona. There is no way I could make that trip without the help of these medications. Whatever it takes for me to be able to function. To be the best I can be. I don't think anyone is aware of how important this is to me. I almost lost my life to cancer. Now, I don't want to take anything for granted.
As lawmakers consider new legislation to address the misuse and abuse of opioids, I urge them to adopt balanced policies that do not restrict access or cause unintended consequences for people like me who rely on opioids to relieve chronic pain. It's important that newly adopted policies make it difficult for the people who do not need opioids to access to the medications.
This is my story. But, I'm just one of thousands who is dealing with chronic pain and relying on opioid medicines to live each day with less pain. Restricting my access to the patients who need this medicine most would be devastating. Please think of the potential unintended consequences that come along with any policy changes.
Evelyn Lopez is a ACS CAN volunteer from Hazlet, New Jersey.