This is not just a story about two diseases. It reflects a deeper problem in our healthcare system – one that decides which conditions are taken seriously, which patients are believed, and whose suffering is prioritized.
Consider diabetes and Pernicious Anemia (PA). Both are chronic conditions requiring ongoing, life-sustaining treatment. Yet the way they are treated could not be more different. This disparity is not only frustrating, it is dangerous.
This level of care should be standard for all chronic illnesses. But patients with Pernicious Anemia often experience the opposite. PA is an autoimmune disorder that prevents the body from absorbing vitamin B12. Without regular intramuscular B12 injections, patients may suffer irreversible nerve damage, cognitive decline, and profound fatigue. Despite the seriousness of these outcomes, PA patients frequently face suspicion when asking for treatment. They are told their serum B12 levels are “in range,” even when struggling to walk, think clearly, or function. The problem is that serum levels are a poor indicator of true B12 deficiency, especially when neurological symptoms are present. Yet these lab values are used to justify denial of care.
When treatment is granted, it is often on an arbitrary and insufficient schedule. One injection every one to three months is not uncommon. Imagine telling a person with diabetes they only need insulin once a quarter. The idea is absurd, but that is the reality for many PA patients.
This fear highlights a troubling reality: these patients are forced to hide the very treatment that helps them survive because the system has failed to meet their needs. They seek the one intervention proven to halt disease progression and relieve debilitating symptoms. Yet, too often, their suffering is dismissed and their access to care denied.
It’s like paying your mortgage on time, only to be locked out of your own house, forced to hire a locksmith every time you want to go inside. Patients contribute to the healthcare system through premiums and copays, yet are denied access to basic, effective treatment unless they pay extra and circumvent the very system they already support.
None of this diminishes the care people with diabetes receive. If anything, it highlights what is possible when a condition is taken seriously. Diabetes care should be the model, not the exception.
People with Pernicious Anemia deserve informed providers who understand the complexity of B12 deficiency. They deserve to have their symptoms heard, and not dismissed as just lab values. They deserve to be treated as patients, not problems. No one should have to fight this hard to access basic, effective treatment. And no one should be made to feel invisible while trying to stay alive.
They are not asking for special treatment. They simply want to be heard and receive the care essential to their health and well-being. The healthcare system must uphold its Duty of Care by understanding the complexities of Pernicious Anemia and providing timely treatment for a condition that can be progressive, debilitating, and even fatal. Imagine watching a loved one deteriorate and being told they must wait months longer for an injection—or that they are “really fine.” For many PA patients, this is an everyday reality. It’s time to change that.
Yes this is a good blog post. In the UK there are more people with vitamin B12 deficiency than with diabetes yet it doesn’t get treated due to the misleading serum B12 blood test which is still in frontline use, despite nearly 20 years of pointing this out to the so called “professionals”.
People with PA do not get adequate support or treatment but diabetics don’t quite get everything they need – my mum was on metformin and not on any B12 until I developed PA and found out what was going on. I got her on the B12. She turned 90 last month. Our “health” service is actually only a drug service. No vitamins allowed!
Ive been diagnosed with PA since 2015, moving to a new regional area I was questioned when I told the doctor I had it, so three years without any B12 injections Ive had dizziness, nausea, sleeping almost 16 hours straight, trembles and experiencing pain beyond a joke. It was only after being told, well you don’t have it, then told that sometimes it can fix itself???….ok, and just this week I get a phone call from my doctor….you need to come into have injection for 3 weeks straight…oh so now I have it again……
I was denied all medical care during the Pandemic, this lasted three years. I had to forego my B12 injection protocols, whereas there were means to prescribe it by mail. I feel my pain has increased, opioids were withdrawn at outset of Pandemic, fatigue, endurance, and falls have followed: I don’t know the natural progression of the disease, or the consequences of discontinuation of care for three-years. I’ve been terribly sick, and
weaker than before. It’s hard to sort out what is normal aging and what’s consequences of being denied healthcare during the three-years of the Pandemic. The hospital owned clinics simply closed, we were warned to stay away from the ER.
Good article. But why hasn’t anything changed with decades of this problem being pointed out? In countries where injectable B12 is not over the counter but by prescription only, that needs to change immediately so people will not continue to be disabled and killed by the medical community. That would be a simple fix to this. Why isn’t it occurring? The medical community has largely been irrelevant to patients with this illness for many years now, other than instilling in patients a fear of them obstructing access to the help to not die that they have been forced to seek out apart from them.- These doctors are a sick joke. They are killing people.