Mental Illness Awareness and Patient Advocacy

The term ‘Mental Health’ is unfortunate, because the last time I looked, the brain was connected to the body, right? Hardy Har Har. Actually, Mental Health Parity, where a person with a mental health condition receives equal insurance coverage as a person with say…..cardiovascular illness or diabetes, that’s where we want to go with this.

 

On advocacy opportunities:

 

If you have a medical or mental health condition you have struggled with, a medical condition, and you think you’d be a good advocate, a note of warning: This will NOT help you obtain the medicine except to possibly guide you to charitable foundations who can provide copayment assistance grants, like National Organization of Rare Diseases, (NORD) who helps me with my Tardive Dyskinesia Medicine. The drug company can NOT be involved in that process, however.

 

You can do Twitter Outreach. Google the Drug Company and look for key players or even local drug reps on social media. When doing Twitter outreach, you can direct message the manufacturers  of the medication that applies to your illness if you want to get involved.

Remember, however, that this type of work is highly regulated, and you might rather do something more low key and less ‘legal,’ so to speak.

Mental Illness Awareness Week and Advocacy Opportunities in General

 

 

One time I applied for a patient advocacy, it was a sorta kinda ‘job’….(often I get paid what’s called an ‘honorarium,’ it’s not always a lot, but it’s nice to be recognized, and the money helps pay for things I wouldn’t otherwise be able to afford).

Anyway, my first contact was with the Drug Company rep, who said they were indeed looking for people and turned me over to a big PR firm who specializes in Pharma and Patient Ambassadors or ‘Patient Influencers,’ as we are often called.

The first step was to get my Medicare part D to make a ‘formulary exception request’ so I could have access to this medicine. This particular Medicine is very expensive, so my Medicare Part D denied it over and over again. I filed grievances and did expedited appeals, and got rather crafty at that. I pestered my insurance long and hard and finally, they agreed to pay for the drug, so I began to pursue this opportunity again. It didn’t work out, but the lady I interviewed with on a conference call gave me some hints as to how to find more of this work.

 

One of the ways she listed was to go on specific medication or drug company websites and if a prompt comes up to ‘Tell Your Story,’ to go ahead and do that, give them the gratis content they seek, because they also look for patient advocates via these sites and the stories we tell. The more colorful a story, with lots of hurdles to overcome, the better. It’s even ok to include dialogue and description in these stories so that the drug company knows what you were up against in your pursuit of health and wellness, which is not always easy. In fact, it’s never easy. By sharing our struggles, other patients and physicians are often emboldened to tell their own, which is really what it’s all about.

Patient Activists Re Schizophrenia and Tardive Dyskinesia

It’s not the “Allison Strong Show:”

One of the things I’m learning about this work is that I need to be more of a leader. Other people want to ‘talk shop’ and compare notes, which can lead to gossip and comparisons. I hate it when I compare myself to others, I always come up short.

 

That being said, there is this incredible lady who is running a foundation for Schizophrenia research, treatment and recovery. Lots of the content on the site is holistic, or functional, nutritional psychological….it’s not ALL about medicine.

If you are interested in any of this you can find Bethany Yeiser at Curesz Foundation. She also wrote an incredible book, called “Mind Estranged” about her recovery from Schizophrenia.

 

This particular video is about a drug that I take, it does not aggravate my neurology the way the newer drugs did, I had less weight gain than I did on Seroquel, and in my humble opinion, this drug is woefully underused. Why? It’s not a new drug, not on patent, and therefore, no money going into marketing. Second reason: Monthly blood work to guard against a very rare, but fatal side effect.

 

But also, Clozaril almost never causes Tardive Dyskinesia. I wish I’d been on it from the  beginning. So worth it. My life is better today because of it.

Mental Illness Awareness Week and Patient Advocacy…part of a series

Above…just a real picture of a real human being, shaggy bottle dyed red hair that badly needs cutting….. and all.

We all want to improve our lives and help other people along the way if we think we have something to pass on, a situation we survived. I have several of those. Tardive Dyskinesia. Eating Disorder. Depression, Addiction….Allisonism, if you want to know the truth. But I told you I’d talk to you about how you can get involved, so here’s where I’m coming from.

 

The opiod epidemic drives me crazy, because there are a bunch of people doing their best to bring it to a swift resolution who have absolutely no idea, from an experiential perspective, what it’s like to have pleasure, pain, euphoric recall, the power of suggestion, peer pressure and any number of other mental and emotional factors driving something that’s just so basic…..pleasure, unequaled bliss, is how I remember it.  As excruciatingly difficult as it is, we can reclaim our lives. If I’ve done it so can anyone else. If I get an opportunity to speak to people in any sort of ‘recovery’ setting, (I hate the word ‘sober,’ and the word ‘recovery’ but that’s just me) I will jump to get there, no matter what. Sometimes the one-size-fits-all box of abstinence only 12 step programs gets in my craw, but I get over it. If it weren’t for the rooms of AA, who knows, I might not have made it.

So….here are a few things I picked up from a nice lady at a PR firm who thoroughly vetted me (job references, an interview conference call with their legal team)…when it turned out that for regulatory and legal reasons, they were NOT going to hire me, after all. It was a great experience. I learned a lot.

People at PR firms, casting directors, ad agencies, whoever is trying to promote a product, they are looking for that flash of inspiration that they need, they don’t know exactly what it is, but they recognize it when they see it. So you have to put yourself out there. Get connected with PATIENT COMMUNITIES, http://www.Health-Union.com and look for the health condition that might match a medication that is for that condition, whether you are taking it or not. Often times, we are hired for general “Disease Awareness” and asked to tell or blog or do a video about our story, irregardless of what medicines we are taking or intend to take in the future.

If they ask you to upload a picture, make it a ‘real person’ shot, not a glamour shot. They want someone who exudes beauty and humanity from within, it’s in the eyes, the smile, the tone of voice. I’ve got much more for you on this subject later. Let me know how you are doing with this, or if you think I’m full of shit. Sometimes I am.