Racism in the medical field appears to strike again, and I’m fuming
UK decisions on Casgevy for sickle cell have left me confused and angry
Every now and then, something happens that motivates me to educate others about how a particular action, policy, or system is oppressive to me, as a Black woman with sickle cell disease. It’s always a difficult conversation, but almost always necessary — in many cases for societal equity. This is one of those occasions.
For most of my life, sickle cell has been hidden or unknown to most; it’s rarely featured in mainstream media, as far as I can remember. So you can imagine my shock when, after living with this illness for over two decades, I saw headlines about a possible cure for it.
I’ve shared with readers the emotional roller coaster that was spurred by those headlines. But just when I thought that journey couldn’t get any worse, it did.
In November, the Medicines and Healthcare products Regulatory Agency in the U.K., where I live, authorized a gene therapy that aims to cure sickle cell disease and beta-thalassemia, another inherited blood disorder. But by March, that light within the sickle cell community went out when a different U.K. regulator, the National Institute for Health and Care Excellence (NICE), issued a provisional decision that it wouldn’t recommend the exa-cel treatment, known as Casgevy (exagamglogene autotemcel), for use by the National Health Service, partly because the treatment wasn’t deemed cost-effective. (The U.S. Food and Drug Administration approved Casgevy for sickle cell patients 12 and older in December.)
This move was a real blow to the sickle cell community. But I’d thought Casgevy’s approval seemed too good to be true, so I wasn’t surprised at all. The fact that I don’t expect better from our system demonstrates a problem. Since then, my initial indifference has quickly turned to rage.
In June, my jaw almost dropped to the ground when I read that NICE had authorized the gene therapy Hemgenix (etranacogene dezaparvovec) for hemophilia B, at a cost (2.6 million pounds, or $3.34 million) that exceeds the proposed cost of Casgevy (1.65 million pounds, or $2.2 million). Further, I saw last week that NICE had authorized Casgevy for severe cases of beta-thalassemia, which makes me believe the therapy doesn’t have efficacy issues.
I’ve read countless articles in an attempt to identify a justifiable reason why this treatment can be permitted and funded for certain hematological illnesses, but not for sickle cell disease. So far, I’ve not been able to find such a reason.
Let me add that I’m not for a second saying that hemophilia B and beta-thalassemia patients don’t deserve this treatment. Of course they do. My point is that sickle cell patients deserve it, too.
The pattern I’m seeing
This decision adds to my awareness that sickle cell patients often have their symptoms overlooked and underplayed, even during medical emergencies. We’re constantly having to advocate for our needs to be recognized and taken seriously. The U.K.’s Casgevy decision for sickle cell use seems to be another example of that.
Hemophilia B is roughly as common among white people as it is in other ethnic groups, while beta-thalassemia is more common in Mediterranean and Asian populations. Sickle cell disease, on the other hand, is far more prevalent among Black ethnic groups than any other. Given that, I wonder: Could the U.K.’s decision on Casgevy for sickle cell be another example of medical racism against Black people?
That wouldn’t be OK.
So many sickle cell patients have spoken out about the real-life impact of their disease. We’ve begged to be taken seriously as patients; we’ve begged to be seen.
When we in the U.K. aren’t well, we expect medical services to help us. But instead, we with sickle cell often find them demoralizing, stripping away our dignity. We beg to have our pain acknowledged, beg for our medication to be given on time and at the right dosage, beg to receive adequate inpatient care while in the hospital, beg for governmental services to understand our limitations, beg for workplaces to be flexible to our plight. Every day we’re forced into the battle of advocacy. It is tiring. It is dispiriting. It is infuriating.
We should not be treated as less than any other patient group.
We’re living with an illness that makes us constantly weak and tired, an illness that brings much pain. Sickle cell causes us to miss time off school and work, which can make for a glass ceiling for financial earnings and academic potential. It causes organ damage, bone necrosis, and low immunity. It constantly interrupts life plans. And it’s nothing we’ve caused. We’re just trying our best to combat it while being productive members of society.
We’re doing our part. I’m asking our governmental agencies and decision-making bodies in the U.K. to do their part, too.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.
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Comments
Mary
Thank you very much for this article. I agréé with the author. Merci beaucoup. Je suis très fatiguée. .
Yvonne White
First of all I sorry to heard that this happen and I understand your anger. My son has sickle cell disease and I have spent many nights in the hospital with him and feeling hopeless because I couldn't take the pain away.
My question is: Is this gene therapy denied only in the U.K.? and who can I contact to get this decision reverse.
Whitney Smith
So sorry to hear you experience this especially in the U.K., like you I too live and suffer with Sickle Cell and racism is no stranger to us. I call this disease the “black sheep of diseases.” This disease gets so much disrespect it’s ridiculous. I too experienced racism and stereotypes. Not having the great amount of pain in, being looked at as a drug addict, a faker, a hypochondriac, and the list goes on and on. In the doctors office and in the hospital. The “professionals” in the healthcare act like it’s our fault we have this disease even though we were born with it. I recently was kicked out the hospital, yes I said “kicked out” because I was discharged despite I kept telling the doctor i was still in a lot of pain and wasn’t ready. Because of the insurance I have I have the right to file an appeal which was pointless because it was denied (as usual). I have used this service a total of 6 times and it have NEVER been approved. And what the doctor wrote was even horrible because my numbers looked stable and my crisis was treated THEY felt I was ready to go home. Basically dictating my pain and how I felt. Another incident I experienced is fighting to get my pain meds. Even though the last prescription was written on 07/16 but because I went into the hospital on 07/21 and got out on 08/10 they going by my hospitalization instead of when the last prescription was written because in their eyes i should still have pain meds at home. Again dictating illness and my medicine cabinet. They don’t care about us and this disease because predominantly Black folks have it and have heard it be referred to as the “black disease.” It seems like if you don’t have cancer they don’t care. People that have and live with cancer I call them cancer privileged because I have seen and heard them say they don’t feel ready to leave and the doesn’t let them, but when I tell them I’m not ready to leave I basically have to fight and beg to stay and I shouldn’t. I’m pretty cool with some of the nurses at the hospital I go to and confine in them and they say I’m doing the right thing advocating for myself and the disease but it don’t feel like it or it’s enough because the same stuff continues to happen and I feel like I’m not being heard. And honestly I’m tired of fighting. Since I want to be in the entertainment industry I want to do a reality show or something showing the life of living with Sickle Cell and what we go through. I’m just so tired and exhausted of this disease being overlooked and not taking seriously. Sickle Cell is serious just like any other chronic illness. Enough is enough!!!!
Scott
I don't have any direct connection to Sickle Cell, but I do know a little about CASGEVY and a lot about financial models., The estimated monetary cost for treatment of Sickle Cell in a young person is estimated at 1.3 million pounds ($1.7 million US). That is treatment cost alone, not factoring in HUMAN CAPITAL cost (lost wages, absenteeism, lost productivity). That is estimated at 11 - 16,400 pound per year ($15- 22,000 US per year). Factor in other expenses, such as the financial toll on the family, and it is relatively easy to see the disease cost over a lifetime equaling the single CASGEVY treatment regimen cost. All the current data has shown that once you complete the treatment protocol there is a 100% cure rate for the disease (an early test patient treated with CASGEVY recently completed a climb to the summit of Mt. Kilimanjaro). Please don't think I am ignoring the human toll of the disease, and what it does to individuals and their families, I am just approaching this from my area of expertise, and further supporting the claim of hypocrisy if your National Institute for Health and Care Excellence (NICE) wants to talk about cost effectiveness in pounds and pence. I hope there is something that can be done to reverse that decision. I know the maker of CASGEVY is working on different compounds, and as adoption of the treatment widens (Saudi Arabia just gave it the green light) maybe the cost will come down and (not) NICE will reconsider.