64 Comments

It's worth watching this video to find out how to get cheaper drugs and abandon the exploitative pharmaceutical industry. 12-3-24 Mark Cuban’s War on Drug Prices: ‘How Much Fucking Money Do I Need?’ https://www.wired.com/story/big-interview-mark-cuban-2024/. Mark Cuban Cost Plus Drugs Company https://www.costplusdrugs.com/medications/. He has an extensive formulary drug list which includes some cancer drugs and MS medications. I hope this helps.

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You are a good man, husband, and father. You have given a tutorial so that more families can become successful and spend more time loving and building their families.

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I'm so happy for you, your beloved, and your beautiful baby girl! Her story has now brought me to tears again. Thank you for continuing to fight the good fight for us all, my friend. 🕊️♥️🙏

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Even if you’re not denied outright, co-pays and cost-sharing can put medication out of reach. I’ve turned down two prescriptions recently, one from my cardiologist and one from my PCP, because I can’t afford the co-pays. (the cardiologist was able to work with me and find a more affordable alternative, although I assume he’d probably prefer I take the drug he initially prescribed.)

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I'm sorry to hear that, and I completely relate! ♥️

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Mr Rashid,

Thank you for updating us on the battle with your health insurer to get the life saving medications that your daughter needs, approved. And really appreciating your advice on how to advocate for a loved one with an insurer if our claim is denied, plus your offer of advocacy to anyone else who has been denied. The term Hell corporation is a much more suitable description than health insurer - rather, these companies are deniers of what we need for our health.

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I’m relieved that your insurer will now cover your daughter’s medication ! It’s a well written post outlining how awful our medical insurance companies are. Thank you for advising others on how to fight back when it happens to them.

Peace

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No words. That is insane but so glad it finally worked in your favor. Just think of all of the families who have no voice.💔

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Doing my best to elevate for them too.

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Wow... I'm so glad that these idiots changed their tune. While I don't condon murder, after reading your family's story and knowing there are thousands of other families going through the same hell, I understand Luigi Mangione's actions.

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Insurance denials add to the costs of this dysfunctional system Just to turn mediocre "executives" into raging sociopaths worshipping at the feet of the golden calf.

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For most of human existence health care was by no means a human right. Only since the advent of modern effective health research and innovation could we ever hope to see some equity in health care. It was almost simultaneous that Insurers saw another profitable opportunity to offer health insurance to help defray the costs of hospitalizations and then also the costs of physician's treatments. From that point on, it became again a game of the haves and have nots. My father insured our family with blue cross and even then in the 40's and 50's it was a burden - but a proportionate one. Neither of my parents lived long enough to witness the catastrophe of today's health care - but my mother who trained as a nurse in the 20's had no faith whatever in doctors or hospitals and avoided them like the plague. (She was no fool but now I wonder just how bad the situation was in the hospitals of that era?)

Today, health care may not be a human right but we are now in an era where it is a human obligation. Given the sorry state of food degradation, rampant toxification of our environment thanks to "better living through chemistry". if we don't chase universal health care, our species is headed for extinction.

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A moving article QR! Thank you. I know it comes from your heart. A blessing to your daughter, wife, and entire family for sharing such a personal and traumatic experience. You and your family have given hope to countless others. Stay on your journey of truth & righteousness!

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Thank you Michael ❤️✊🏽

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Qasim, this is as sickening as you think it is, and much more so because this happens to many more people than just you and your family.

The placard at the beginning of this post says "Health care is a human right, not a business." To the extent that that's arguably true, that's the reason we don't have health care in this country. We have a medical industry. It is in fact a business. It often has little or nothing to do with anyone's health. It's about moving money from where it is, such as your bank account, to providers, other vendors, and insurance companies. Likewise, in your "For those who have followed my work..." paragraph, I will say again that despite your castigating use of the word "violent," America does not have a health system. As I said, it has a medical industry. It happens that the vehicle for powering this industry has something to do with the medical field, but this fact should not be taken to mean that medical treatment, and certainly not "health care," are the primary goals.

Your second bullet point is incorrect: it absolutely IS "normal" to collect other people's money, such as by charging them insurance premiums, and then not support treatment. If you wanted to say it SHOULDN'T be normal, or it isn't normal in real countries, I would agree with you. In this country, that's part of how the medical industry works.

Your and Ayesha's efforts have been heroic and unflinching, and I'm very glad you embarrassed the insurance company into relenting. I hope the number of subsequent approvals won't be rescinded. Do you want to know if I trust the insurance company?

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Thank you Fred. You and me both.

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There are two problems here. The last time you wrote about this issue, you said you had gotten the drug company to give you the medication for free. Apparently, they decided not to continue to do that. Everything in the American medical industry is highly overpriced. The drug company has no need to charge $200K+ per year for this medication. They can get away with it, so they do. At the cost of some lives? What do they care? In the meantime, they're making a huge profit, even if temporarily, until the patient can't pay for the medication, and dies. (If you haven't seen Michael Moore's "Sicko," please watch it.)

The second problem is your comment that the insurance company's expense (with respect to your daughter) is $200K+, but their income last year was $88B. Your daughter is not their only expense. For all you know, there are many people who want/need highly overpriced interventions, and if they paid for all of them, it would eat up far more of that $88B than just $200K+. Plus, the insurance company, like the rest of the American medical industry, is profit driven. They want to keep as much of that $88B as they can. That's a problem for you? It's not a problem for them.

And the critical foundation for all of this is American government, which is for sale to the larger donors. All of the components of the American medical industry -- the providers, the other vendors, the insurance companies -- can do what they want, because they pay off legislators not to stop them. And in many ways, that's the biggest problem. If we had a real government that cared a whit about the public, it wouldn't be the way it is. We made some headway, if it was temporary, with the Diagnosis Related Groups (DRG) in the 1980s and 1990s. Obama could have done more and better with the ACA, but either he didn't want to rock the boat too much, or he got paid off, too, and he settled for a scheme that preserved the private insurance companies. The ACA was better than nothing, but it could have been a lot better than it was/is.

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There is one more aspect to this struggle that many of us face, whoch is that doctors often do not even bother to recommend or pursue the treatment that would be best for the patient, but rather only acknowledge whatever limited treatment they are sure the insurer will cover. It's not even a matter of the patient having to know whether or not the insurer's actions are normal. The patient has to know whether the doctor is offering best treatment, or just the easiest to obtain treatment.

Once that doctor's notes are in one's file, it's very difficult to find a doctor who will give an honest second opinion. One has to become politically savvy, and seek out a doctor who's in an institution without strong ties to the first doctor, then find a way to make the case that a second opinion is needed, without letting on that one has lost faith in the first doctor. It requires the patient to lie about what they need, in order to not trigger professional wagon-circling.

There are deep flaws in the insurance system, absolutely. It is not the case that all doctors are ready to battle against this situation. And once a doctor who's not interested in providing the best care has tainted one's medical record, one's at an even greater disadvantage than one was in, before. This also must change. How it can be made to change, I don't know. Tearing down the shielding assumptions that care would always be great, except for the insurers, might be one place to start. Requiring excellent care be covered under single payer, and not just the "go ahead and stay disabled" care currently provided by single payer, that's another thing that needs to happen.

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letterwriter, it's much more complicated than that. The most glaringly obvious problem is that you're envisioning a patient who can know what the doctor knows. That doesn't happen, unless the patient is a doctor in the same or closely related specialty. Patients who are not doctors can't know if the doctor is making the right suggestion. Second opinions most commonly occur because the patient just isn't trusting, or because the first doctor's advice isn't working. In some situations, second opinions are required, either by the state or by the insurance company. I'm a psychiatrist, and second opinions are required in many or most jurisdictions for ECT. I don't do ECT, so it doesn't affect my work. And in over 46 1/2 years, I have probably referred a patient for ECT maybe twice. You're right that doctors protect each other, and will more or less always agree with each other. So it's a useless exercise. I'm much more rogue than that, and I find psychiatrists to be wrong most of the time, and I most commonly dismantle treatments that never had to be there (and are on the basis of wrong diagnoses) or should have ended long ago.

But to get back to your premise, doctors go to medical school for four years, do a one year internship, then a residency, then sometimes a fellowship, and are in practice for varying amounts of time. What intuition on the patient's part is going to equal that, and give the patient a reliable reason to doubt what the doctor says, diagnosis-wise or treatment-wise?

As for doctors' battling insurance companies, you're right: they commonly can't be bothered. Or they hire extra office staff to do it. That's one of the reasons I don't take any insurance, and I keep a very low fee that makes me accessible to anyone. If the patient gives me a reason to know it's a strain, I tell them to pay me whatever is easy. If they have nothing, I treat them for free. As the opening placard said, "Health care [if we had it in this country] is a human right." It is owed to the public. My job is to treat people to relieve them of their problems. It's not to treat myself to their money, or as much of anyone's money as I can lay my hands on.

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Jonas, You're a psychiatrist. You are also globalizing assumptions about what patients would and wouldn't know, without any reference points other than the fact that a doctor has gone to school: a fallacy compounded by the fact that you have no idea what a patient has or hasn't studied. Stay in your lane.

Patients who have watched their condition develop have data points that correlate to thrir symptoms. Long term patients often develop expertise in their situation. Research is absolutely comprehensible, especially when a patient has domain knowledge as many do, for many reasons. Beyond that, doctors' dismissals of evidence often stand out just as the fallacies you've committed do, because they deviate from best practices and because symptoms can only be considered and correctly discussed in a small set of ways; dismissal of symptoms, hand-waving, illogical incorporation of impossibilities: these and other intellectual failures go against the grain of how a differential diagnosis is supposed to proceed and stand out clearly. Failure to examine is patently obvious. Playing games during physical examination is patently obvious; the instructions for physical examination and discussion of the nuances that form a competent examination vs one that will fail to elicit symptoms that are present to be elicited under a correct examination are readily available. These are all just a few examples.

It's not "more complicated than that". You're demonstrating the leap to defense of the profession which is at the heart of the problem I described: once a midwit doctor sullies the patient record, the patient has to not only be able to search out new doctors--who are never in infinite supply in any coverage area--the patient has to be able to avoid practitioners like yourself, who are more interested in asserting the mystical infallibility and "complexity" of every doctor's opinion no matter how poorly formed, than in paying attention to critique.

Shove off.

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letterwriter, I did not say it's "more complicated than that." I said it's "much more complicated than that." I have said to many patients many times that I will beg them. If necessary, I will get on my knees and bet them. They should not look up, or "research," anything online. They don't know the credentials and experience of whoever put it there. They do not know why the person put it there. They certainly don't know if it's true. That's what they have me for. That's my lane.

Nurses, and nurse practitioners, for example, commonly have substantially more medical-related training than do people with no formal medical training. I have worked with several. They mostly don't know what they're doing, and they don't know that they don't know what they're doing. I see I've provoked you, and I'm sorry for that, but if you think that having a condition, and having experienced evaluation and treatment for it, is equal to formal and extensive medical training, then I'm sorry to say you're kidding yourself. If you do have some sort of medical condition for which you've gotten treatment, would you "hang a shingle," and offer to treat other people for what you've decided is probably the same condition? If you would, the state where you live will convict you of practicing medicine without a license. Even actual medical doctors have to keep up, and earn continuing medical education credits every year.

If you think that I have demonstrated a leap to defense of my profession, or my specialty, then you did not read and understand my comment to you. Medical doctors -- even the best of them -- don't have "mystical infallibility." They have training and experience. At best, their knowledge and perspective are hard-earned. At worst, as you describe, they are not adequately serious and attentive. I don't know what you do for a living. If you are a professional of any kind, then you had a professional education. Think back to how much you knew about your profession, if you have one, before you began your professional education/schooling, and how much you knew about it after all of your training was complete. Would you say you knew vastly more at the end than you did at the beginning? If you would, how much does someone who never had your training know about your profession? Could they duplicate what you know by doing their own "research?"

Substack is a great place for conversations. It is not a great place for disrespectful cracks like "shove off."

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Substack is a terrible place for you to have weighed in on a patient's observations for a medical situation and doctor relationships about which you are completely uninformed. My direction to you to "shove off" wasn't a crack and it wasn't a suggestion. You're not my physician and you don't have permission to involve yourself in my discussions of care with other people.

You are correct that nurse practitioners have very little knowledge. They often have less knowledge where it counts than the patient they are talking to. You are mistaking breadth of studies for relevancy of studies.

You are also confused by the fact that doctors study, into thinking they always use their knowledge. They don't.

Iatrogenic injury is one of the leading causes of morbidity and mortality worldwide. Negligence and failure to provide the best care plan are both contributors to this, at various points in the caee process, and these two factors are only even partially captured, as patient-dismissive defenses such as you are attempting to raise serve as bulwarks against evaluating plans of care for evidence of doctor disinterest and patient downranking, with commensurate quality gaps in the care they do receive. Even with that, studies have clearly shown that care plans and appointment availability suffer for patients on lower reimbursement plans such as Medicare/Medicaid and that's far upstream of the lags and delays for these plans to cover more effective interventions with fewer side effects, compared to private insurance: a category of gap in care which can be addressed by doctors via arguments for medical necessity but which very rarely is. The fantasy of committed, engaged doctors is extremely far from the reality.

It's early in the morning in the USA. I suggest you have a second cup of coffee and then go schedule an appointment with one of your colleagues to investigate why you feel so overconfident in yourself that you are continuing to weigh in, about something you know nothing about (physical treatments for physical ailments and the complexities and individual and institutional psychodynamics of that ecosystem).

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Have a very nice day.

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I am happy to hear that your insurance finally paid for your daughter's medicine!❤️ no one should have to go through all that!

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Since when does being able to see a doctor without mortality your house make one a Communist?🤢🤮💩💩💩💩💩💩🤬

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I am also happy that they finally did what they should have done from the beginning … but they should be exposed every time in every instance.

People should not have to beg for their children or anyone else to get medical care . There should be a standing rule that a service worker does not have more sway over a medical expertise than a physician . Give me a break . Money over peoples ( some of them children ) health needs has no place in our society.

It’s become standard practice to deny the care leaves money to spare”

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Agreed and well said Patricia.

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