Hope at a High Price

And for many of us who can’t afford an $8000+ price tag,
that’s exactly what we’ll continue doing…and doing…and doing…

I’ve been following the CGRP research and trials with both hope and trepidation–hope because they’re the first drugs developed specifically for migraine prevention and have shown a great deal of promise, and trepidation because the projected price tag is astronomical for the average sufferer.

This article gives a lower projected price than many I’ve seen, but it’s still far beyond reach for many of us.
How long will we have hope extended with one hand and snatched away with the other? Many of us with chronic migraine are disabled and unemployed due to this terrible disease. We can’t afford many CURRENT treatments with a much lower price tag, much less this one.

What good is a highly promising medication if those who need it most can’t afford it?

– Selena

"Most people think of migraine as headaches. But head pain is commonly accompanied by severe, disabling symptoms like nausea, vomiting, dizziness and sensitivity to light, sounds and smells. The disease is far more widespread than realized: About 38 million Americans, or 12% of the population, have them, according to the non-profit Migraine Research Foundation. 

But treatment options are limited. Just a handful of drugs were developed specifically for migraine, though drugs for other conditions including blood pressure and epilepsy have been found to work, too. Still, there haven’t been any new drugs in development for some time, experts say. 

A promising new group of drugs, named after calcitonin gene-related peptide (CGRP), a neurotransmitter tied to migraine, has changed that. CGRP drugs are being developed both to prevent migraines before they happen, and to stop attacks once they occur. 

The former category is closest to being available for patients. About seven million patients would likely get the treatment, estimates Evercore ISI analyst Umer Raffat, with an $8 billion to $10 billion potential market size. 

Amgen Inc. AMGN, -1.03%  has already filed for approval, and Eli Lilly & Co. LLY, -0.21%  and Teva Pharmaceuticals Industries Ltd. TEVA, +1.61%  have plans for later this year.
Alder BioPharmaceuticals Inc. ALDR, -0.85% is also developing a preventive CGRP drug, and further research on the drug class is expected at the American Headache Society’s annual meeting, which began Thursday and runs through Sunday. 

But price and access remain a persistent question. Projections begin at about $8,500, concerning patients and headache experts alike. 

Dr. Lawrence Newman, director of the headache division at NYU Langone Medical Center and immediate past president of the American Headache Society, says that could add on to the “double whammy” of having migraines, which describes the symptoms and stigma patients face. 

“I’m concerned that the patient will again be exposed to that double whammy,” he said. “They’re made to suffer because of the disease they have and because the insurance company won’t allow them access to a potentially effective therapy.”

Read the full article at New migraine drugs have promise — and a $8,500 price tag.

#MigraineAndHeadacheDisorderAwarenessMonth #chronicmigraine #NotAHeadache #migrainenews #MHAM 

The Love/Hate Relationship I Have With Medications for my Illnesses

I truly wish more people understood this about chronic illness:

We are not drug seekers.
We’re not after pain killers–we’re after treatment that will reduce pain.
Big difference. 

Many (if not most) of us have a serious love/hate relationship with our medications…even the ones that work for us. Possibly especially the ones that work for us.

The thing is, many of the meds we take have side effects.

I know, everything has a side effect. Something making you feel better is a side effect, if you want to get technical. I’m talking about things that, even as they help us, make us uncomfortable and actually sometimes as unable to function as we were before taking them.

Weight gain. Weight loss (yes, that can be a negative). Loss of sex drive. Hair loss. Stops the attack/pain, but knocks you out/leaves you in a fog. Impairs your mental or cognitive function- memory, ability to concentrate, etc.

And guys, I’m 100% serious when I say sometimes these are only the MILDLY annoying side effects.

I’m not even counting the “oh my god, what is this doing to my body in the long run” concerns. Or the fact that they don’t always work 100% or at all. Or realizing that there is no one magic treatment or doctor that will give us our lives back. Or that many treatments are expensive or limited by insurance.

And I know- you’re thinking if something has an unpleasant side effect, what’s the big deal? Just stop taking it.

And there’s the rub.

Because when you’re sick every day, you learn that you have to weigh the evils sometimes.

“Am I willing to deal with ___ so I can not hurt today?”

“Am I willing to deal with pain, etc., so I don’t have to take this one?”

“Can I function through the day if I don’t take this?”

And the big one: “Is feeling better worth this?”

Sometimes it is…and sometimes it isn’t.

Sometimes I skip meds so I can function, and sometimes I can’t function without them.

I can be both thrilled to have them and loathe them at the same time.

And I’m not alone.

We are legion…and we’re tired of getting the side-eye and judgments that come along with living with disorders that we didn’t ask for.

Why should we be treated as if we’re wrong to want to feel better for a while?

Wouldn’t any of you do the same?

Hard question to answer.

Most of us are still trying to answer it every day.