REPORTED BY
NORMAN J CLEMENT RPH., DDS, NORMAN L.CLEMENT PHARM-TECH, MALACHI F. MACKANDAL PHARMD, BELINDA BROWN-PARKER, IN THE SPIRIT OF JOSEPH SOLVO ESQ., INC.T. SPIRIT OF REV. C.T. VIVIAN, JELANI ZIMBABWE CLEMENT, BS., MBA., IN THE SPIRIT OF THE HON. PATRICE LUMUMBA, IN THE SPIRIT OF ERLIN CLEMENT SR., WALTER F. WRENN III., MD., JULIE KILLINGWORTH, LESLY POMPY MD., NANCY SEEFEDLT, WILLIE GUINYARD BS., JOSEPH WEBSTER MD., MBA, BEVERLY C. PRINCE MD., FACS., RICHARD KAUL, MD., LEROY BAYLOR, JAY K. JOSHI MD., MBA, ADRIENNE EDMUNDSON, ESTER HYATT PH.D., WALTER L. SMITH BS., IN THE SPIRIT OF BRAHM FISHER ESQ., MICHELE ALEXANDER MD., CUDJOE WILDING BS, MARTIN NJOKU, BS., RPH., IN THE SPIRIT OF DEBRA LYNN SHEPHERD, BERES E. MUSCHETT, STRATEGIC ADVISORS
BY
Michael Allen
NOVEMBER 12, 2021
Living with Sickle Cell
When I am asked to speak about sickle cell, I immediately feel the connection to the hundreds of people we have met over the years in the Sickle Cell population. This population includes the patient, family, and friends who are their caregivers. This connection begins with the understanding of the frustration and the pain that we all live with.
The frustration comes from having a genetic disorder that allows some health care providers to make a conscious decision to treat us differently than patients with other disorders.
The devastation this disease causes reaches far beyond the pain episodes that can occur without warning. Living with chronic pain causes many of us to handle these moments differently than people who have pain infrequently, or who have had surgery for example.
Most sickle cell patients can have pain that could be measured as an 8 or 9 and they can keep their composure when most people would be crying or screaming out for help, people with sickle cell may sit and listen to music, talk on the phone or do something to act as a distraction. Coping with pain on a long-term basis allows the individual to develop a level of tolerance that thankfully most people never have to understand.
However, with this tolerance comes the misconception that these patients are not in the type of pain they claim to be in. This causes many of these patients to be misjudged and mistreated and that mistreatment many times starts in the Emergency Room.
In the ER these patients are often made to wait for hours suffering in pain because someone has decided they are not in pain at the level they claim to be at, or that they are simply there seeking the pain medication. For many of these patients making the decision to go to the Emergency Room versus attempting to make it through the night and go into the clinic in the morning where the staff knows them, brings about one of the first triggers to the stress that they must cope with. Years of poor treatment in the ER setting have conditioned many in the adult population to consider any other alternative before making the decision to go to the Emergency Room.
When your pain and other symptoms dictate your need for medical treatment but you realize that the very place you need to go is also the one place that may ultimately increase your stress and your pain, it is an irony that is hard to accept. Along the way, we have met patients who have been so traumatized during their attempts to seek care that they have developed coping skills that they hope will prevent a repeat of past events. Some of them dress in their Sunday best and bring all the money that they have so they can prove to the health care provider that they are there seeking medical assistance. To try and prove that if they were looking for drugs they had the money to go buy them. Once the patient is finally taken into the exam area, the next phase of this process begins.
The next phase is the issue of getting as close to the correct dose as you can because once again, you must defend or explain repeatedly what your actual pain level is. If you try to be direct and demand a certain dosage, it may send a false signal to the hospital staff that you are simply drug-seeking. Yet, if you don’t speak up at all you may not receive an adequate dosage that can manage your pain.
This is part of the struggle that every Sickle Cell patient can come across in an Emergency Room visit. One potential remedy to this barrier to care could simply be an established pain management protocol. This Protocol would be based on that patient’s prior admissions and prior dosing requirements.
While many hospitals have yet to establish this type of protocol, with those hospitals that have, it still comes down to the issue of trust. Because some hospital staff has a pre-existing prejudice that affects how they treat patients with this disorder. As a result of these repeated negative events, a large percentage of the adult Sickle Cell population has been affected by Post Traumatic Stress Disorder which to a large extent has not been diagnosed.
Living with a severe chronic disorder can wreak havoc on a family in almost every way, financially, psychologically, and with relationships of every type. People who live in this chaos dream of a way out, be it from within by overcoming the disorder in some way, or from outside help either from friends, family, or from a benevolent organization willing to support them.
Yet the latter option is rare to find. There are few organizations willing to support a family with a holistic support system that fixes every problem one might have. There are usually large holes in a supportive organization’s safety net that they are unable or unwilling to patch. They either only provide guidance in finding other support programs, or maybe a one-time small financial donation to alleviate a short-term financial need. Or they provide education on a certain issue to help an individual or family improve their own chances of overcoming their problem.
The process of improving an individual’s or family’s quality of life can vary greatly based on the disorders, the complexity of the disorder, the length of time living with this disorder, as well as the range of resources available. The range of resources will vary based on the disorder and the established foundation of resources for the said disorder. Sickle cell as an example may have a wide range of educational resources as well as various treatment centers, yet the actual resources for sickle cell in terms of emergency funding for food, utilities, housing, and transportation are virtually non-existent.
Therefore, as an example, someone with cancer or kidney disease will have a much easier time finding emergency funding and additional resources. We have come to understand that the length of time a family or individual has been forced to go without resources and support will contribute to the number of man-hours and resources needed to remedy their short-term and long-term needs.
We want all disease communities to have a support network that is equal to the cancer community. However, we understand that hospitals and healthcare communities’ reimbursement for certain disorders creates a barrier with regards to resources. Sickle cell is a prime example of a disease community that has never had a strong support foundation on a national level and one that is not a large profit center for hospitals. There are strong regional agencies that do an excellent job in regards to awareness and access to care in their local communities.
What is unique in regards to sickle cell and the quality of care is that the disorder is perceived to be a black disease. This racial component has helped create myths and barriers that at some point will affect treatment for every sickle cell patient in this country.
Many sickle cell patients are living in environments where their most basic needs of quality of care and treatments are still lacking. What needs to be understood is that until 20 to 30 years ago most healthcare communities considered sickle cell to be a pediatric disease. This was due to the high mortality rates in this community. This meant that most of the patients did not live into adulthood. As a result of improved treatments many large urban communities are now seeing much larger adult sickle cell populations.
Unfortunately many of these centers are not prepared to handle the large amounts of patients seeking care. Who in many instances have endured mistreatment and have been perceived to be drug seekers by healthcare providers.
Sickle cell is a disease that causes pain, and years of suffering from pain mean that most patients develop a high tolerance to pain and pain medications. Most patients also learn to cope with chronic pain differently than people who do not have chronic pain. They either teach themselves to cope, are taught by their caregivers as a child, or are taught techniques to cope by a therapist.
Therefore, as stated before, due to the existing prejudices that exist in healthcare, one of the misconceptions that sickle cell patients have to deal with on a constant basis is this perception that they are not in the level of pain that they claim to be in.
This misconception creates a level of mistrust between the patient and healthcare provider that leads to an additional barrier to care. Also, this often comes as a surprise and a depressing shock to therapists when they are told that their coping techniques are backfiring on patients.
This surprise exposes a lack of communication within the healthcare industry. We feel that many of these issues would be alleviated if there were better communication between different parts of the industry.
For example, if patients’ primary physicians were able to communicate with ER physicians and In-patient doctors and explain to each other the nuances of an individual’s care perhaps we would see fewer frustrations on the patients’ side in regards to care and discrimination.
So along with the need to establish quality care and treatments for the individual and the caregiver, the sickle cell has the added disadvantage of not having a source of funding when the individual or family runs into an emergency that requires money.
These disadvantages have caused long-lasting negative effects for a lot of caregivers and families including things like PTSD, not only for the patients but the caregivers.
This also includes a loss of employment, dropping out of school, loss or lack of close relationships, as well as an extremely long-lasting financial burden that most of these families never recover from.
Other disorders have an established resource network, and that network includes funding for emergencies of all the aforementioned needs.
FOR NOW, YOU ARE WITHIN
THE NORMS
