I am Dr. Rabbi-Cohen Shalomim Y. HaLahawi. I have battled with having Sickle Beta Thalassemia all of my life(42yrs). While I have overcome many obstacles related to having Beta Thalassemia, including putting myself through college, obtaining my Masters in Rabbinical Studies, A doctor of Pastoral Psychology & a Doctorate in Integrative Medicine, it does not negate the tragedy I have experienced growing up & throughout adult hood & also witnessing directly & hearing about the nationwide systemic discrimination, mistreatment & improper care of sickle cell patients. This is not a secret that Sickle Cell patients who suffer from acute and chronic pain from sickle cell crisis, including ongoing/secondary pain related to organ, tissue & bone damage(which are often ignored as factors during hospital visits for care), are seen as habit seeking liars, who over-exaggerate their pain & are simply hostile & wanting drugs for what Physicians, who've never experienced a crisis a day in their life, see as themselves knowing what is best for those who are suffering & what is not really happening, just because of a lab test, as opposed to the physical & real experience a patient is having. I can vouch & say that even though I am trained in addictions therapy, I am almost always suspected of habit seeking when I visit a hospital. Like many other patients, my medical records have been padded with tons of misinformation, falsely accusing me or suspecting me of being a habit seeker, which is a form of defamation that physicians can get away with, with almost impunity. This behavior of doctors padding patient records, then sets up the tone for subsequent Doctor visits by the patient, for such patient to be seen & treated as a suspect of habit forming behavior, despite the reality that the patient is in a true painful crisis. Its even been documented that those with Thalassemia disease, may not even show a crisis via blood lab for up to 72 hours after onset of crisis episode, thus like myself, who almost lost my life, many patients are subjected to negligent treatment & dismissal of crisis, many times being sent home from the emergency room or released prematurely after being admitted. Many sickle cell patients can vouch and say they feel they are treated less than human. When you have a person in severe pain, being mistreated, its inevitable that frustration is going to show. Many healthcare providers(doctors, nurses etc), will take this hostility in a manner that reflects a total lack of cultural competency, and further notate and pad a patients medical records, thus pouring fuel on already burning fire, making it almost impossible for such patients to get adequate care. Many Doctors, especially from my experience, those from countries such as India, where the Caste system has been apart of their culture for thousands of years, don't even try to get the patient involved or give the patient a voice in his/her care, as if the Physician believes he/she is a god unto themselves. Many times when a patient complains about improper care, healthcare providers can retaliate by deliberately reducing the amount of pain meds a patient receives or alters what is usually an effective plan of care that a patient usually receives.
It is definitely a fact that most Hospitals do not even follow the national guidelines for the treatment of sickle cell patients. I have myself had to challenge healthcare provision to myself and other I've known, given by hospitals, by showing how they are not following guidelines. Some adjust to the guidelines, others will show arrogance & completely ignore such guidelines & make an impatient hospital experience a living hell.
Patient advocacy is very minimal & usually in-effective for sickle cell patients.
Sickle Cell are also on the forefronts of being victims of the rise of Antibiotic resistant bacteria due to healthcare providers habitually abusing & misusing antibiotics on sickle cell patients. Usually patients are subjected to using antibiotics as prophylaxis. from early childhood. Parents are frequently forced to give certain medicines, like antibiotics & hydroxyurea(which studies have shown can contribute to sickle cell crisis & severe side affects), under Threat, duress and coercion(i.e. threatening to call the Department of Family Children Services). Antibiotics are frequently given to SS patients, while in the hospital, even when no clinical indications suggest its warranted. This includes giving antibiotics before the results of blood labs are completed.
Its also wide spread that sickle cell patients are subjected to unnecessary chest X-rays, even when there are no complaints of chest pain nor any indications of respiratory distress.
When a patient or patients parent object to anything they believe is unnecessary treatment, they can be documented as being hostile and non-cooperative, thus continuing to perpetuate the system of mistreatment, suspicion & negligence.
Its also a growing trend that Hospitals/Healthcare facilities are creating an environment of segregation against Sickle Cell Patients, under the guise of being Sickle Cell Units, where patients are separated from the rest of the hospital & emergency population & placed in separate facilities that does not provide the same level of care. This is because many hospitals see the treatment of sickle cell disease as the least profitable. Thus separating us in emergency rooms & kicking us out of the hospital(including being escorted out by police/security, even when visibly still in pain) after being admitted, almost seems like a system wide priority, because of lack of value placed upon us.
The fact of the matter is that Sickle Cell & Thalassemia disease is usually found in people of color. In the USA, the African American community are usually the face of sickle cell. Those of Mediterranean, Middle Eastern & South Asian descent are also carriers. Sickle Cell in America is usually seen as a Black Disease. Thus there is a correlation between the systematic discrimination against people of color, including in the healthcare system, with the systematic mistreatment, discrimination & negligence of sickle cell patients.
I am sure hundreds of thousands of those who suffer from this debilitating, painful disease, can come forth with similar experiences of widespread mistreatment & dehumanization in the National medical system.
This destructive, damaging system, that gives very little voice to those of us who suffer from this genetic disease, needs to be stopped. Our care needs major reform & we need the White House and the US government to step in and help protect our rights. In fact this should be the next civil rights issue that should not only change American policy, but also policies around the world, as sickle cell patients struggle in other countries to get adequate care and proper treatment, with dignity and respect.
(PS: it took a lot to write this and hold back tears from decades of frustration & emotional pain inflicted on top of the physical pain I/we experience)
Updated May 2021:
My vision for healthcare reform before #Wokism &
#blacklivesmatter, is based on experience, not politics
By Dr. Rabbi-Cohen Shalomim Y. HaLahawi OMD, PsyD, DFH, DFM,
While I started this petition before the Liberalized version suddenly just popped up recently, It has nothing to do with
#wokism. I started this "Failed petition" based on my experience both as a healthcare provider and a patient who has Sickle Beta Thalassemia Disease. Who on numerous occasions received outright discriminatory healthcare that almost cost my life by wreckless healthcare providers in Emergency rooms that automatically determined in their heads that I was just there for drugs as a habit seeker, before I was even evaluated, already dismissed before I was even treated until they realized I was a physician & worked with the UN and WHO, and was the Supervising physician over the Sickle Cell Foundation of the State of Georgia Support group, only to then to offer me 5 star medical treatment & care.
Well, what about all of those other sickle cell patients who don't have that kind of background and simply need compassionate healthcare just because they are human beings? They don't have the kind of protections & connections I have to get quality care which should be afforded to everyone.
And even with my background and connections, I still ended up running into straight up ass-holes who think they are above any and everyone and don't give a damn about someone like me other than what they think, believe or say, which led to me suffering much longer than I should have, getting severe medical injuries that could have been avoided and basically derailing what could have led to me being one of the Top US physicians in this day and age, yet due to permanent injuries, many of which still have not been properly addressed today, even after I've settled lawsuits for my injuries and suffering(i'm literally on the brink of several more lawsuits for negligence before I'm even finished with the current one which has just concluded as of last week after 11 long agonizing years), those possibilities seem dim(Not that I am not totally satisfied with being a holistic Doctor instead who supports Eastern Medicine over Western medicine now precisely because of the gross failings of western healthcare).
It's even more crazy about the whole thing is that it's not even the white doctors treating us like trash. Its Black doctors who treat us worse and those doctors from India, especially if they come from families on the top of the Caste system list, who are treating us the worse, causing more prolonged suffering and creating the Dehumanizing effect we experience to the point even someone like me would rather stay home and suffer than go to a emergency room and be treated less than human.
Escorted out of an emergency room while still very ill? Yes that happened to me. Ending up in ICU after being accused of Habit seeking & sent home in clearly visible agony and pain, while the emergency room Physician completely ignores the fact that because I have thalassemia it can take up to 72 hours for a test to confirm a crisis, yes I've been through that.
Kicked out of a hospital bed and told to leave as retaliation for me appealing a wreckless discharge decision, with the needle still in my hand(I had to remove it myself), but then blaming me and my wife for violating hospital rules just because she leaned on me in the bed and fell asleep on my shoulders, yes I've been through that(despite everyone knowing that my wife does that all the time previously and continues to do such with absolutely no problem from medical practitioners and other Doctors who see it).
Told straight up as soon as the Doctor comes into the Emergency room to do his first evaluation that no matter how sick I am "they are not admitting any sickle cell patients that day", yes I've been through that!!!!
Lied to and told that
#Dilaudid is safe and not addictive when I was in my early 20's after I specifically complained that it causes withdrawal symptoms(and prostatitis). Yes been through that!!
And all of this happened "After I became a healthcare provider"...
And what is soooooo F$%^ up about the whole thing of automatically treating Sickle Cell patients like drug addicts is the fact that THE MEDICAL SYSTEM HOOKED MOST OF THEM ON THE DRUGS IN THE FIRST PLACE. THEY GAVE THEM/US THE NARCOTICS, which is basically a continuous cycle of "forced addiction"...
I count myself as still blessed to have the medical knowledge that I have in addition to having an addictions therapy background, I avoided many of the catastrophe's that many others become ensnared within. And yet still I've suffered emotionally and physically due to more mistreatment or lack thereof by the medical system than Sickle Thalassemia itself. If it were not for my foreign medical training, my trip to ICU in Dec 2007(room next to James Brown before he died), I would not be here today as that is where I would have died. Ultimately I had to treat myself to save myself from death in ICU.. This is an un-exaggerated FACT!!!
Keep in mind most of my mis-treatment came from Black & Indian Doctors. And I have no regrets saying right now that I would never put my life into the hands of a
#BlackAmerican Doctor(except for 1 who is a primary care associate) nor a Physician from India, the nation notoriously known for Caste system behavior(Many of these doctors are not vetted properly when coming to America, and carry that caste attitude which they inflict on people of color, who in India would fit the Dalits of India aka untouchables).
The entire medical system of America needs reform. Especially with regards to Integrative health. How the US system looks down on more ancient healthcare systems from Nations of people of Color such as Ayurvedic Medicine, Oriental Medicine/Chinese/Asian Medicine, Islamic/Talmudic, Unani and Siddha Medicine, is directly rooted in their inherent Superior Complex Syndrome that espouses that Western(white) medicine is superior to all other forms of medicine from Non-European Nations. This has to stop because Allopathic only medicine, especially for primary care, is basically poison and serves as why Western medicine destroys more lives than all Eastern medicine systems combined. And they continue to espouse this racist ideology by trying to hide behind science(despite making surgery patients sign waiver forms acknowledging that such practice is not the scientific practice of medicine, before all surgeries are performed....FACT)
Holistic reform in addition to compassionate fair treatment reform must occur. Compassionate Healthcare should not be a privilege it is a human right. It should not be profit-driven, it should be human-focused.
Yahwah Elah is the founder of Medicine and he approved of what constitutes Naturopathic Medicine. So how can western medicine be superior to what Elah has founded, ordained and given to mankind? Yet western medicine can find itself a heroic system by simply integrating the two, along with human and healing focused care rather than palliative tape fixing medicine.
I'm not here to promote favoritism medicine based on skin tone or race, so I not support
#racebasedmedicine as what is being spewed by
#liberals and
#Democrats. I am here to advocate for compassionate human focused medicine but also to ensure people such as sickle cell patients are treated with dignity, respect and as equal human beings that are worthy to get the fullest healthcare available. Where we are not rushed out of hospitals so that they can have beds available for those who have more money, but where we can have a stress free experience that helps us improve faster.
Yet, 21 signatures is all I got over the past 4-5 yrs. That speaks alot. Since it comes from a
#Jewish person of Color who is also
#Conservative it goes ignored. But yet Wokist can repeat what I stood for and suddenly its an important issue.
Not fair. Not fair one bit. Yet still, I stand a voice crying out in the wilderness, alone, trying to bring much-needed evolution of America's healthcare precisely so it can be the best healthcare system in the world.
How much more damn
#patriotism is needed to get support from my own constituents?
Shalom,
Dr. Rabbi-Cohen Shalomim Y. HaLahawi
Edenic Light Integrative Pastoral & Family Life Care
www.edenic-light.com
