Pain, Opioids, and the Sickle Cell Disease Patient
As a sickle cell disease patient, I have lived with chronic severe pain and illness since early childhood. With that said, I have always been able to work with my doctors to figure out solutions when the pain is at its worst. Before the opioid epidemic, I never had a problem having narcotics prescribed. Unfortunately, these days those who suffer debilitating pain may have a much more difficult time treating it in the most effective ways—which may include narcotic pain medication.
The Origins of the Opioid Epidemic
In the late 1990s, when Oxytocin hit the market, several waves of the opioid epidemic began crashing down upon the nation, changing how doctors prescribe narcotics to limit damage stemming from addiction and misuse of the drugs. The second wave began in 2010, at which time many individuals overdosed on heroin. Then, in 2012, synthetic drugs became popular, specifically Fentanyl, which has contributed to many deaths by overdose.
Each of these waves has brought its unique repercussions. Still, it is important to consider how the rules and regulations implemented to combat the opioid crisis have changed the way doctors look at SCD and other patients suffering from painful, sometimes debilitating chronic illnesses. According to the CDC, the number of drug overdoses increased by thirty percent from 2019-2020, with many individuals affected by the epidemic recognized as non-Hispanic white.
Research is Powerful, but Stigmas Continue
One aspect of living in this universe to always remember is that change is constant. While many breakthroughs in medicine and treatment options accompany more in-depth studies of SCD, there always seems to be a glitch regarding the patient experience. Recent history has illustrated that expanding treatment options and improving their effectiveness thrive on SCD research. Additionally, increasing awareness and funding research that leads to notable events and achievements can help improve the patient experience. For example, by the 1950’s a group of geneticist dismantled the social construct of race by finally declaring SCD a molecular disorder. By the mid 1970’s the invention of the PCR test came through the study of sickle cell.
However, the awareness stemming from such scientific advancements does not always circulate in the medical—and other—communities as it should, allowing the widespread poor understanding of the disease to continue the stigmas associated with SCD patients, including those related to drug use.
Drug Addict or SCD Patient? Let the Stigmas Go!
By far, one of the most annoying stigmas I’ve faced while living with sickle cell disease has been being called a drug addict. Individuals living with SCD are not drug addicts. However, they are drug dependent—and there isn’t anything wrong with it. Honestly, sometimes narcotics don’t even do the trick, as healing a flare-up requires time, rest, and patience. It certainly isn’t helped by the anxiety of feeling inadequate in a world that holds us accountable for our survival but judges our reliance on a specific type of medicine to achieve it.
Like anyone else, SCD sufferers must work and make money. Just like everyone else, there are bills and responsibilities. And, while sickle cell disease is a subjective experience, not everyone facing it can work a mundane nine-to-five job or even twenty hours a week. However, it becomes entirely possible in some cases with the appropriate treatment options for our pain levels.
There are many barriers to living successfully in this world while facing SCD—and some of them may hold us back, but they don’t have to stop us entirely. A few years ago, during the emergence of the opioid epidemic, I experienced a sickle cell crisis that left me hospitalized for fourteen days. Upon my discharge, the doctor who had been treating me refused to write me a prescription for the appropriate narcotics to continue treating the pain at home. Instead, he told me I would need my hematologist to provide it at my follow-up visit. That was a full week away!
Doctors Fear Prescribing Narcotics—Even When Necessary
I found it peculiar that the doctor who treated me for SCD-related pain refused to write my prescription. It was the first time I had ever been refused a prescription for home treatment in the countless times I had been hospitalized. After arguing back and forth over the issue, he eventually revealed that with the arrival of the opioid epidemic and new laws implemented, he couldn’t write me a prescription without fear of losing his job. I understood his predicament, but it still made absolutely no sense.
One of the most interesting facets of being human is that we all have different perspectives. That doctor would never truly understand how SCD patients must deal with their pain, still working and accomplishing their daily tasks despite sheer agony during flare-ups and crises.
Improving but Still Ineffective Rx Procedures
Since then, I have found that the healthcare system has improved concerning providing appropriate prescriptions to meet the needs of those suffering long-term, chronically painful conditions—including SCD. However, there is still a very specific limit on the amount of this type of medication one can obtain each year.
Please don’t misunderstand my view here. I understand that the opioid epidemic is a massive issue that threatens lives, but by losing the ability to treat pain as needed—sometimes daily—with the only medications that may work, our lives are also in jeopardy. SCD patients in constant agony cannot participate in society as they could otherwise, leading to difficulty maintaining their independence.
Perhaps the only effective solution is to pour a significant amount of research into discovering effective alternative treatments for those individuals who encounter pain that requires treatment daily. When the next opioid epidemic strikes, it is unknown how it will affect those individuals suffering from chronic and severe pain. With this knowledge, doesn’t it make sense to work to increase research and determine a solution to this pain that will be less inextricably linked to narcotic and opioid treatment?
It could truly be life-changing for many.
