Sickle Cell Anemia Patients Impacted by MassPat
The Boston Medical Center emergency department gets over 100k visits per year, and on Wednesday, November 1st around 8 a.m., Diana* was one of them. “Looks like you’re in a lot of pain,” said Dr. Bernstein kindly. “Still up for talking?”
“Yes,” said Diana, forcing a smile. “It’s nothing new.” Diana came to the ED for acute pain associated with sickle cell anemia. While the disease is inherited and unpreventable, even Diana's health care seems out of her control.
Lifelong Health Problems and Issues with Medical Care
Diana has had difficulty communicating with medical professionals throughout her entire life. Her parents were immigrants and may have underutilized the healthcare system due to low health literacy or fear of repercussions from ICE, a common concern among new immigrants. But even when she did complain about pain as a child, she felt that her symptoms weren’t taken seriously. “My two brothers had the gene for sickle cell, but doctors told me I didn’t have the real disease. They didn't' believe me" she sighed. “I always thought, ‘What’s wrong with me?’”
She took it upon herself to find out what was causing her pain. “I looked up sickle-cell in a library book, and only found a little paragraph,” she said, indicating its size with her thumb and forefinger. While the lack of substantial information was disheartening – discovering the difference between S.C. vs S.S was a game-changer. It empowered her to become an advocate for her own care.
When asked to describe sickle cell, she seemed to simultaneously swell with pride and deflate at the monotony of it all. It was clear she has been explaining her own condition to the people around her for her entire life. She described how the red blood cells are misshapen, making it harder for them to flow through her veins. The lower oxygenated blood flows throughout her body, causing pain everywhere, including her teeth and even bones. “I feel tired and weak all the time, but I wish that was the worst of it.”
Access to Care
Diana is so familiar with the medical system that she knows when to avoid incoming classes of new interns. “They think they know what’s right,” said with a sympathetic eye roll. “I try to stay away from the ED when they’re brand new.” She has been working with a patient navigator for the past six months who helps her with phone calls and appointments. Having someone who knows her and her history is very important to Diana - and for good reason. “I don’t like jumping around from doctor to doctor,” she said.
Diana’s experiences with the ED and her PCP are hugely impacted by MassPat, a statewide policy that was passed in an attempt to curb the opioid crisis. Currently, all Massachusetts clinicians seeking to prescribe a Schedule II or III narcotic medication or a benzodiazepine must look up their patient's prescription history in the state Prescription Monitoring Program (PMP) database. While Diana is prescribed opioids to manage her chronic pain, current laws limit the amount she can receive, which means she must return every two weeks to pick up her prescription. “While created with the best of intentions, it has had unforeseen consequences,” said Dr. Bernstein. “The shoe doesn’t fit for Diana or others like her with chronic pain.”
“While created with the best of intentions, [MassPat] has had unforeseen consequences. The shoe doesn’t fit for Diana or others like her who are managing chronic pain.”
A failed drug test has compounded the problem. Diana used cannabis to manage her symptoms but says she unknowingly smoked marijuana that was laced with cocaine. It came up in a drug test at the hospital, but the staff didn’t tell her that she had tested positive until weeks later. “I couldn’t figure out what was wrong, but I knew they were treating me differently,” she said. “If they would have told me when it happened, I could have done something about it,” she said.
Now, even though she has seen the same primary doctor at BMC since she was a child, she feels like she faces increased stigma from hospital staff. “It’s like they look at me and think, ‘Why are you here, why are you showing up so often?’” Diana said. “I want to tell them, ‘As if I knew! I don’t want to be here. If you can give me another solution - then do it!” She knows that there have been several clinical trials for new types of pain medication, but she’s never eligible. “You wouldn’t tell a diabetic that they’re addicted to insulin, so why are you treating me bad for using the medicine you’ve prescribed?”
“You wouldn’t tell a diabetic that they’re addicted to insulin, so why are you treating me bad for using the medicine you’ve prescribed for me?”
With her chronic illness, she feels alone and unsupported, even when she is at the hospital. “When I come to BMC, I see all these signs about cancer. They have support groups, meetings for survivors, knitting groups for family members - sometimes I think to myself, ‘Do I need to get cancer to be treated with respect?’”
Social Support and Environment
Diana is married with six children, and her responsibilities as a mother and primary caregiver complicate her own care. “I can’t stay overnight,” she emphasized. “My children come first and I need to get them to school.”
Although Diana has a large extended family, she doesn’t seem to find much support from this circle. She feels uncomfortable sharing her medical condition or needs with in-laws and seems to have already made up her mind about who to rely on when it comes to her health - herself. “When I’m feeling bad, I’ve learned to smile and say I’m fine. I have no choice. I have to keep going.”
Transportation insecurity remains to be the biggest barrier to both her own health and the health of her family. Diana lives 10 miles from the hospital and doesn’t have a car, which means that at least every two weeks she makes the trip by bus. If she doesn’t have access to her prescription and the pain becomes unbearable, she calls an ambulance and ends up in the ED.
Systemic barriers like the lack of transportation also have a huge impact on her family. The schools that her children attend don’t send a bus to her neighborhood, and they have missed school if Diana isn’t feeling well enough to walk the two miles to the nearest stop. Due to her chronic pain and the challenges of managing the healthcare system, committing to simple tasks like PTA meetings or volunteering for school field trips becomes insurmountable. “Teachers don’t understand why I’m always rescheduling,” she said. “It’s not that I don’t want to participate… it’s just always iffy with me.”
Policy Recommendations
Diane is an individual with individual needs, and there is not one policy or prescription that will fix the challenges that she faces. However, after spending an hour speaking to her about her illness and challenges within the health system, it’s clear that small policy changes at the hospital, local, state, or national level would dramatically improve Diana’s care and life outside of the hospital;
An amendment or exception to MassPat for patients managing chronic pain would ensure that Diana always has access to her prescriptions
Legalization and for alternative treatments for pain. If marijuana is a viable solution, legal access would ensure her safety.
Mental Health Care should be included in primary care to help with coping mechanisms and bolster resilience
A support group for sickle cell patients at BMC
Transportation takes up an enormous amount of Diana’s time. If the school district could commit to providing bus service to her neighborhood, she wouldn’t have to worry about walking her kids to school. Additionally, improving public transportation infrastructure in Boston would help low-income citizens. Free transportation to and from BMC would also be life-changing.
So many things in Diana’s life that are impacting her health and exacerbating her health condition are out of her control. If we as a society could take a more holistic view of health and prioritize the elimination of health disparities along racial and socioeconomic lines, we would be helping people like Diana stay out of the ED and lead a healthier and happier life.
