Dear Hate, by paynepills

I hate when I take a pain pill and decide minutes later I really didn’t need it.

I hate when I’m starving and so nauseous I can’t eat.

I hate when I see that twisted look of pity and sadness on someone’s face when they hear about my condition.

I hate when people say, “I don’t know how you do it.”

I hate when people say, “I get migraines, too.”

I hate when painkillers make my nose itch so bad I want to rip it off my face.

I hate when all the nose scratching leaves a mighty pimple.

I hate insomnia.

I hate mornings after taking sleeping pills and muscle relaxers, when the bed is too comfy and the world is full of jagged edges.

I hate switching painkillers, so I have withdrawal from one and problems acclimating to the other all at the same time.

I hate constipation from too many painkillers.

I hate when I miss something important because of a migraine.

I hate when someone needs me, and I can’t be there because of a migraine.

I hate all the loss migraines and depression cause.

I hate how all those pills make my skin sensitive and my hair thin.

I hate listening to myself whine like this.

I hate that I’ll think of other things to add, right after I sign this as

Payne.

I share this with all of the chronic pain warriors fighting every day for respect, compassion, empathy, and belief. Bless you Payne! wpid-fb_img_1424364439689.jpg

Monday Morning Mood

Another Monday. Another week gone. Another started. So stressed about appeal hearing. Trying to stay positive and calm. Not happening. Breathing exercises, positive imagery, keeping busy, nope. It’s so close now. I want time to speed up and to slow down. I am terrified of the outcome. This is EVERYTHING! My life. How I live it. If I can live it. No more options. No other road. No backup. Worst case scenario, denial. Another appeal. Another 3 years. No. Not possible. No money. No possibility of working at any job. Most days getting out of bed in the morning is the hardest part of my day. Some mornings I just don’t. “Sorry Boss! Can’t come in again! Can’t drag my ass out of bed!” Yeah, that’ll go over well! My only contact with the outside world most days is online. Friends have left me. So much pain. Jackhammers and ice picks. My head, neck, shoulders, wrists, hands, fingers, hips, knees. Shooting pains, numbness, tingling, weakness. Ice packs and meds. Not sleeping most nights due to pain. Dozing briefly, then waking up from nightmares. Aphasia, sweating, chills, horrible images left over in my head. Hearing voices and seeing things. All part of Fibro and Migraine. But don’t tell anyone! They’ll lock me up! Medication side effects. Tremor, dry mouth, dizziness, vertigo, nausea, vomiting, stumbling, unable to finish a task or sentence, incoherent, slurring, etc. Depression and anxiety. Causing me to cry uncontrollably, panic attacks, hopelessness, fear of everything and nothing. Unwilling or unable to leave the house. Lonely. Wanting my old life back. My old self. No confidence, no self-esteem, no sense of self. I feel like a burden because I am one. I was self-reliant. I was a functional member of society. What am I good for now?! So much hinging on a stranger’s decision about my life, which they no nothing about. Just doctor reports and impressions. I wish any of them could spend a few hours with me. See what I see, hear what I hear, feel the indescribable pain I feel. Just another day at work for the judge. My future in their hands. So much at stake. Please think of me. wpid-wp-1423238659414.jpeg

What The Daraprim Price Hike Actually Does To Health Care A bracing reminder that jacking up drug prices is perfectly legal.

Anna Almendrala
Healthy Living Editor, Huffington Post
Posted: 09/22/2015 10:38 AM EDT | Edited: 09/23/2015 02:14 PM EDT
In August, a startup company called Turing Pharmaceuticals AG bought the exclusive marketing rights to Daraprim, a 62-year-old drug that treats toxoplasmosis, a parasitic infection that can affect those living with HIV/AIDS and cancer.

Led by CEO Martin Shkreli, a former hedge fund manager, Turing jacked up the price of this humble yet life-saving drug from $13.50 per pill to $750 — a stunning 55-fold overnight increase that drew widespread criticism.

Shkreli didn’t invent the practice of acquiring the exclusive rights to an old drug and hiking up the price — in fact, CorePharma, another pharmaceutical company that acquired Daraprim before Turing in 2010, did the same thing — but outrage over his actions have thrust this issue into the spotlight. Doctors, disease experts and patient advocate organizations are banding together to discuss what happens when the price of a pharmaceutical is governed by business interests.

Patient advocacy groups say Turing’s action with Daraprim has put an unjustifiable burden on patients and create unsustainable costs for the health system at large.

The price increase, which took place in August, has already had a chilling effect on the small patient population affected. A joint letter from the Infectious Diseases Society of America and the HIV Medicine Association wrote that hospitals and pharmacies are no longer able to stock the medication. They also calculate that year-long treatment for toxoplasmosis will now cost $336,000 for those who weigh less than 132 pounds, and $634,500 for those who weigh more than that.

‘IT’S CLEARLY THE BEST DRUG.’
In all, only 2,000 Americans use Daraprim every year, noted Bloomberg. While toxoplasmosis affects an estimated 22.5 percent of Americans over the age of 12, typically only people with immune systems weakened by HIV/AIDS, cancer treatment, organ transplants or pregnancy need the medication.

Dr. Carlos del Rio, an infectious disease expert and professor at Emory School of Medicine and Rollins School of Public Health, says that this new pricing places additional barriers between toxoplasmosis patients and the best kind of medicine to treat it. While there are other, second-line drugs that hospitals will likely use instead of Daraprim, they’re not what he would want for himself.

“It’s clearly the best drug,” del Rio told The Huffington Post. “If I had toxo, I’d want to get Daraprim.”

Even if a patient’s health insurance continues to cover Daraprim at the higher rate, there may be added costs to consumers. Pharmaceuticals costs are a top reason that health insurance companies justify raising their policy rates, and society at large ends up paying for it with more expensive insurance plans, or by contributing a bigger percentage of salaries to health care costs.

“Even though you may not think this impacts you, it really does,” said del Rio. “At the end of the day, whether we like it or not, we’re paying for it with our taxes or our policies are going up.”

In response to mounting criticism, Turing Pharmaceuticals AG says it has created special programs to donate the drug to those who can’t afford it, or create payment-assistance programs, noted USA Today. But that doesn’t address larger system issues, like how federal programs like Medicare and Medicaid pay for the drug, or how private health insurance companies make up the cost.

‘THIS IS A PREDATORY STRATEGY.’
When a drug first comes to market, the pharmaceutical company that created it gets 20 years of “manufacturing exclusivity” — meaning the company is able to make and market its creation exclusively. Once that period expires, any firm can make or market the medication under the “generic” label by going through the Abbreviated New Drug Application, a truncated FDA approval process designed especially for the generics market. This usually lowers the overall price of the medication formulation because it allows more pharmaceutical companies to step into the ring, creating competition — and cheaper prices.

But for diseases that have a relatively small number of patients that may need a given medication, other companies often decide the drug is not lucrative enough to justify wading into generics manufacturing. Toxoplasmosis fits this bill, and the fact that no one else stepped up to create a generic competitor means that Daraprim is essentially treated like a new drug on the market. And because Daraprim is the only game in town, it provides an opportunity for startups like Turing to swoop in, snag exclusive marketing rights, and spike the prices.

“This is just a business strategy, this is not a pharmaceutical company strategy,” said del Rio of Turing’s decision to buy Daraprim’s exclusive rights and raise the prices. “This is a predatory strategy.”

The marketing rights for Albendazole, another antiparasitic drug whose patents had expired, was acquired by Amedra Pharmaceuticals in 2010. The average wholesale price of a daily dose went from $5.92 to $119.58 in 2013, which meant that an uninsured patient who needs the drug for six months would end up tens of thousands of dollars in debt, according to The New England Journal of Medicine. And on Sept. 21, Rodelis Therapeutics agreed to return manufacturing rights for the tuberculosis drug Cycloserine after public outcry over a major price increase.

Pharmaceutical price spikes are also influenced by an ecosystem of mergers and acquisitions that reduce competition in the marketplace. For example, between 2002 and 2013, the number of manufacturers making the heart medication digoxin dropped from eight to just three, according to the NEJM report, and the drug’s price increased over 600 percent.

‘WE NEED TO BECOME AWARE.’
What happened with Daraprim is likely to affect other drugs, noted Joey Mattingly, an asst. professor of pharmacy practice and science at the University of Maryland School of Pharmacy. That’s because the U.S. health care system doesn’t have a unified way to appropriately value a drug. For instance, Daraprim used to cost only $1 per pill, according to The New York Times, but CorePharma acquired the rights in 2010 and started raising its price before Turing bought the exclusive rights from CorePharma.

Mattingly wrote on his blog that the decision to sharply increase the price for an old, generic drug — in other words, a drug that any other pharmaceutical company could also manufacture — is based on a gamble that no other company will be nimble enough to immediately get FDA approval for a generic competitor for Daraprim. While Mattingly predicts that within the next year or two, other companies will offer cheaper Daraprim generics, the price will never again go back to where it used to be.

Currently, everything that Turing Pharmaceuticals AG has done with Daraprim is legal. To combat rising drug prices on a systemic level, del Rio called on consumers to start educating themselves about the cost of their medicines.

“We as consumers need to become aware of the price that we’re actually paying for medications,” he said. “If this was something we were buying at the grocery store, we would be paying attention.”

A Different Kind of Pain

wpid-fb_img_1427190082682.jpgSo I had a root canal yesterday. I’ve been putting it off for months due to lack of finances. It finally got so temperature sensitive that I couldn’t drink my coffee. Unacceptable! So I found a dentist who gave me a huge discount and completed the treatment in one visit. I’m glad it’s over. The pain this morning was a surprise. Not sure why. I’m so used to worse pain every day from the migraines and the Fibro. But this is different pain. This is temporary pain. It’ll pass. In a few days I won’t feel it anymore. It’s almost welcome in the strange way. Of course my thought process is so screwed up that my normal is most people’s insane. I can isolate this pain to a single area. I feel it. It hurts. I also know it will be gone soon. If only my daily pain were the same. I fear THAT pain will be with me forever. I’m not giving up on finding a treatment that works. I’m not giving in to a life of constant agony. I think I’m just being realistic. All pain is different. My tooth pain (as bad as it is now) will dissipate. My only hope is that one day my chronic pain will be under control. I’ll never be pain-free. That’s what chronic means. But I have to remain positive. That’s the key to winning! Stay strong and #AlwaysKeepFighting!

Saturday Morning Fears

My SSDI Appeal Hearing is on October 15th. I’m thrilled to FINALLY have a date after almost 4 years! I’m also terrified. What if after all this time of waiting, panicking, worrying, and stressing, they say no?! What if I’m denied yet again?! Back to the end of the line?! I can’t go through this entire process again! Not physically, mentally, or financially. It’s drained the life out of me as much as my illnesses have done. There’s no more money. It’s literally down to the wire. I’m desperate and completely out of options. I’m crying over it daily. (Crying is such a help with a constant migraine too!) I’m sure some of you are saying “think positive” or worse, “stop thinking about it.” Easier said than done, my friends. My psychologist has taught me relaxation, mindfulness, and even hypnosis. It works to a point. Until those thoughts creep back in because they are front and center in my brain. This isn’t a simple answer that I’m waiting for. It’s my future and if I have one. The pressure is unbelievable and constant. I don’t sleep much due to pain and insomnia anyway, but lately I don’t sleep at all. I’ll nod off for a few minutes here and there during the day. At night, my brain is firing on all pistons. I try to make them positive thoughts. I really do try. But this is such a tremendous part of my thought process, that negativity and doubt sneak right in. I don’t know if y’all are familia with an appeal hearing, but the proof is totally on me! Yes, proof! I have to prove and validate my chronic pain and anxiety to strangers. People who have never met me, haven’t seen my struggle to get through a day, haven’t heard my tears and moans of extreme pain. Haven’t seen me try to make it to the bathroom in time to vomit from the chronic Migraine pain and nausea. Haven’t seen me unable to get out of bed due to pain, weakness, dizziness, vertigo, and/or any of the above. How do you prove in a few minutes and words the way my life isn’t mine anymore?! That I’m not the same person I was when I could work, enjoy life, go to movies and lunch with friends, or even smile. These invisible illnesses have taken away my life. They’ve turned me into a shell of my former self. Unless you are with me throughout the nightmare that constitutes a day in my life, it’s impossible to convey through a few words. Especially to people who are not doctors, specialists, medical or psychiatric people at all! The burden is on me to prove that I’m not capable of doing any type of steady work. Why should I have to go through this myself when 2 medical specialists have written letters stating that I may never be able to work again at any capacity?!  What can I say that they haven’t?! The burden of proof should not rest on the patient. Especially when said patient can’t talk about her situation without breaking down and sobbing uncontrollably or finish a thought or find the right words due to migraine and Fibro fog! So yes, I’m terrified. And will be a basket case until and beyond October 15th and I get a decision. Please think of me in the coming days, pray if you do so, and send me positive thoughts! Bless y’all for your caring and support! wpid-fb_img_1422635977059.jpg

Patient-reported outcomes from the 2015 Migraine in America Survey

wpid-wp-1432820251735.jpegBy Migraine.com—September 9, 2015
The Migraine In America 2015 online survey gathered insights from 4,502 patients currently diagnosed with migraines in hopes of better understanding their symptoms, treatment experience and life impact. Those surveyed came from across the U.S. They were primarily female and over the age of 40, as well as being married with children. The 2015 survey continued to illustrate the challenges and impact of migraine among patients, building upon findings from previous Migraine in America surveys.

Diagnosis

Migraine has been a long-standing challenge for these patients; most have been experiencing migraine symptoms for at least half of their lives. A total of 59% started experiencing migraine related symptoms before reaching adulthood and ¼ had identified a specific incident that coincided with the start of their migraines. Over half of patients surveyed experienced initial migraine symptoms of head pain, as well as sensitivity to light and/or sound.

Almost half of patients went at least 5 years between initial symptoms and diagnosis. It was typically the patient’s PCP/family physician making the initial diagnosis, with very few having been diagnosed by a headache specialist. While 65% had been diagnosed with chronic migraine (the most prominent classification reported in the survey), only 62% of patients surveyed fit the classification based on their migraine frequency.

Symptoms

Migraine is more than headache pain – patients experienced a myriad of migraine symptoms (on average, about 16 different symptoms). While symptoms varied somewhat across migraine attacks for many patients, most typically included head pain, sensitivity to light and sound, as well as difficulty concentrating and sensitivity to smell. Over half of patients experienced 8 or more migraine attacks each month, and almost half experienced migraine symptoms on 15 or more days a month.

Almost all patients had identified triggers for their migraine attacks, particularly the environment, stress and light; 77% had taken special steps to avoid these triggers. Additionally, almost half reported they are more apt to experience the first signs of a migraine attack at a certain time of day, and about a 1/3 noted that they experience more symptoms during a migraine attack at a certain time of day.

Nearly all patients surveyed reported suffering from other health conditions, typically allergies, anxiety and depression were the leading comorbidities. A total of 1 in 3 patients suffered from both depression and anxiety.

HCP Engagement

Nearly all patients were currently under the care of a physician (specifically for migraine). Over half were satisfied with that relationship and ¾ were comfortable talking with their healthcare professional about their migraine symptoms. PCPs / family physicians and neurologists were the predominant healthcare professionals patients had seen for their migraines. Interesting that less than half of patients have seen a headache specialist at some point over their journey.

Less than half of those surveyed have visited an ER or an urgent care facility in the past year for their migraines. Among the few who were not currently seeing a healthcare professional specifically for their migraines, the prominent reasons included being able to manage on their own and having given up on doctors.

Treatment Experience

While patients reported feeling as if they had tried everything to manage their migraines – with prescription medications, OTC drugs, complementary and alternative therapies – they continued to seek out new approaches to treat and prevent migraines, and are willing to keep trying new options.

Abortive / acute prescription migraine medications and OTC pain medications were used by over half of patients, with preventive prescription migraine medications and rescue prescription migraine medications also commonly used. Among those treatments tried and abandoned, complementary and alternative therapies had the highest abandonment rate, followed by OTC pain medications and preventive/prophylactic prescription medication. Among preventive migraine medications, antiepileptic drugs were currently used about 1/3 of patients and antidepressants by about ¼.

Amid abortive / rescue medication users, triptans were currently used by over half and anti-nausea medications by almost 40%. Over 2.5K respondents had used a triptan within the past 3 months and ¼ had used 2 or more forms. Three out of 4 of patients who use abortive/rescue medication cited they would initiate treatment within an hour of suspecting they were getting a migraine. Over ¾ had withheld taking a medication to spare it for another time.

Self-medication was currently being used by about 1 in 10 patients surveyed, whereas 1 in 4 patients were currently using complementary and alternative therapies for their migraines. Among current therapy users, sleep/rest and dark rooms were prominently employed, however dietary supplements were used most frequently and consistently by their users.

Migraine Impact

Migraine was most often described as “debilitating” and impacted all areas of patients’ lives – work, career, family relationships, social activities and self-esteem. Depression and anxiety were common among patients surveyed. While almost 60% of those surveyed were still employed in some capacity, a majority of those surveyed were classified as “severe disability” on the MIDAS scorecard.

Despite feeling they had tried all options to manage their migraines, patients continued to seek out the latest migraine treatments – 17% were aware of new migraine treatments that may be coming out soon. Patients also turned to migraine specific websites or their healthcare professional as a resource to learn about or manage the disease.

Summary

Data from the 2015 Migraine in America survey illustrate that migraine continues to have a profound impact on patients’ lives. While the majority of survey participants reported that they take both preventative and abortive medications, more than half still experience 15 or more headache days per month. Unfortunately, patients with migraine continue to face challenges in meeting their healthcare needs, such as lack of access to headache specialists, treatments that lack efficacy, and the stigma associated with living with an invisible illness.

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The Editorial Team is made up of several writers who are all employees of Health Union, the parent company of Migraine.com. Often times we collaborate on articles for the site that may cover a broad range of topics from news articles, reports from our In America surveys, or a summary of feedback that we’ve gathered from our community members. We are very diverse in our backgrounds and expertise, so sometimes we may write as individuals or as a team.

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