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Treatments for rare diseases have generally been able to avoid the most aggressive payer management strategies, like step therapy. Chalk up this immunity to limited treatment options for these diseases, relatively few patients needing treatment for them, and vocal advocacy communities. So when pharmacy benefit managers introduced exclusion lists earlier this decade, it wasn’t much of a surprise that rare diseases were virtually absent from them.

That immunity is being challenged. In 2017, CVS Caremark began excluding drugs in the chronic myelogenous leukemia category. Patients who want to use excluded drugs may be required to pay full cost unless an exception is allowed, which often requires the patient to try a preferred drug — and fail on it — first.


The limited incidence of rare diseases in a commercially insured population, coupled with applying the exclusions only to new patients and allowing existing users to continue using the excluded drugs, made the CVS Caremark move somewhat symbolic. Even so, it meant that a pharmacy benefit manager was able to make exclusions in oncology, the quintessential sensitive-disease category, with minimal noise.

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  • Hi again. Technology!!
    I wanted to comment that I am a Chinese Traditional Medicine practitioner. I thought you would like to understand about what solutions acupuncture and our way of diagnosis and treatment can do for Western Medicine especially as new “diseases” are cropping up. It is amazing what we can help with to help symptoms resolve themselves and they patients are living a quality of life again. My wish see a marriage between Western Medicine and Eastern Medicine, and encouraged for patients to seek licensed practitioners. We are seeing some of this happen by default because of the opioid crises. I was just saying to our board of directors that most Americans really don’t understand how a “Licensed acupuncturist” can help them. Dry needling is a farce by-the-way. It is someone’s good idea of taking a 3000-year-old medicine and trying to re-brand it as something western. What is called dry-needling is a specialty in China that has been around for about 1000 years. Trust me, I have interned in China and I’ve seen it there. There is a lot of problems around Dry-needling.
    Firstly, if Physical Therapist do it, they take a weekend class – 20 hours to 40 hours, and start practicing on their patients that come in. Licensed Acupuncturist who went to a 4-year school has 2700 hours of class time 300-600 hours of clinic time. Big difference! Also, PTs are causing many pneumothorax problems that lead to hospitalization and nerve damage to various parts of bodies.
    I just wanted to let you know others that want to be “in-the=know” around western medicine and drugs, and politics. You guys are doing an amazing job
    Contact me if you would like. And, thank you all. Love your articles.

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