Blog Posts

Change Through Unity

6/11/2016

Wow! I just received word that one of As Prescribed’s supporters was fleeing the scene after reading my pro-Bernie words in a blog post. A promise to help raise funds for the film was abandoned. I was judged to be some kind of leftie miscreant who should not be trusted. I suspect this person was not the only deserter based on a few choice messages I have received recently. The presidential campaign grows more intense. People are feeling polarized and afraid. Discord abounds. Indeed, this presidential election is not bringing out the best in us. Can we agree on that?

To tell the truth, I find the negative reaction to Bernie from some members of the benzo community a tad strange. Why is it that the one candidate who spoke in favor of single-payer healthcare would scare off anyone who knows about benzo harm and the need for change? Granted, back in the 90's Hillary was all in favor of a more equitable universal healthcare program that targeted the power of the insurance industry; and it would not have been out of character for Trump to have spoken in favor of just healthcare in his earlier oft Dem-leaning days. But today, in 2016, when the insurance industry and Big Pharma have a solid hold over our medical care, I have to ask why we are supposed to celebrate the wonderfulness of the Affordable Care Act. It leaves too many in the benzo world with little or no access to quality healthcare. Let me elaborate. Point #1. With the financial losses that most benzo victims sustain, the idea of paying a deductible, even a small one, is difficult, and for some, impossible. Point # 2. The care that is covered under most healthcare policies is rarely what is necessary for benzo healing. How many have coverage for yoga therapy? You laugh? How did you heal, may I ask? For those who have recovered, valuable lessons about healing and maintaining health have been learned. Meditation skills? CBT? Craniosacral? EFT? Or coverage for what is so often the best medicine — fresh, pure, clean food? Not covered, right? Point # 3 — and possibly the most deadly. Our current system encourages doctors of all stripes to prescribe drugs for all maladies and mysteries. Courtesy of Big Pharma, the insurance industry, and the FDA, there are reams of CPT and DSM diagnostic codes with a pharmaceutical drug that can be prescribed aplenty for most, if not all, of them. This is the prevailing model for our current healthcare system, the one that we’re supposed to be so excited about. The thing is, for too many, they take the drug or drugs as prescribed, grow sicker, and end up suffering with far more complicated sicknesses. Like iatrogenic benzodiazepine illness and injury. Yes, that one.

Doesn’t it make sense that those who care about the benzo cause would support (at least partially) any candidate who supports a right to quality healthcare as a basic human right in a civilized and compassionate society? But who will pay, you ask? A valid point. I’m happy to continue this discussion elsewhere. But I hope that my point is taken in the spirit it is meant to be given. I want healing and support for those who suffer, for those who crave health, for those who believe that the pursuit of good health is a human right. And if you disagree, please don’t judge too harshly and at a cost that undermines the bigger picture — the struggle for benzodiazepine awareness and change.

Also at issue here is how often I observe the benzo community turning on its own, hurting both well-meaning individuals and the larger benzo effort. Once judgment is declared, the conversation can turn so, so vicious. I think of Baylissa Frederick and Jennifer Austin Leigh, who have both given so much of themselves over the years to help people get through their hellish benzo journeys. They are positive, healing voices; both are highly knowledgable about patterns and methods involved in each person’s unique benzo journey and recovery. They both offer one of the few legitimate services for benzo discontinuation counseling and coping skills available. Yes, they do charge fees; but the costs are barely enough to sustain them. They do their work from a sense of purpose and need, with zero intent to exploit a vulnerable community. Yet over and over they are judged and attacked. And they always forgive and return because they are wonderful, deeply committed people who represent what is best about the community. But I worry; what if the day comes when one or both of them throw up their hands and say, Enough! ? Let’s protect our protectors. Let’s honor our warriors. All of them, which means all of you too —all who have or are experiencing benzo hell.

World Benzo Day is coming on July 11. I love the WBD motto: Change Through Unity. It does not allow for harsh and misdirected judgment within the community. It is inspiring, and gives me hope that the global benzo community will indeed join the fight for the cause year after year on July 11 until it’s done. Until the benzo beast is vanquished. In unity. Together. Mark your calendars!

In unity,

Holly

hellogobbo@gmail.com

Benzo Bill Moving Forward in Massachusetts House!

3/15/2016

The Benzo Bill, aka the McMurtry Bill aka MA Bill H.4062, is moving forward in the Massachusetts State House!

PLEASE READ AND GET INVOLVED! See below:

On February 24th, 2016 Bill HD4554 - An Act relative to benzodiazepines and non-benzodiazepine hypnotics was filed by Representative Paul McMurtry in the Massachusetts State House. The bill received 47 co-sponsors during the seven day open period in which legislators can co-sponsor. This is an impressive and promising turnout.

The bill was assigned bill number H.4062, and has been referred to the Joint Committee on Mental Health and Substance Abuse. Because the bill was unseasonably filed, it does not have to be heard by the Joint Committee before this legislative session ends, but there is still a chance it could be heard before the July 2016 deadline. The committee will hear testimonies from experts in the field about why this bill is so important to public health and safety. At that point, the committee will decide whether the bill should pass, “go to study”, or be denied. If the bill “goes to study”, meaning that it will require more research before a decision is made, then the bill will be effectively “dead in the water” until next year.

The likely and hoped for outcome is that the Joint Committee will pass the bill, at which point it will go before the House and the Senate for debate, until it ends up on the floor of the House and Senate for a final vote.

What can you do to help?

If you live or have resident status in Massachusetts:

Please e-mail your personal story of benzodiazepine harm to the Chairs and Members of the Committee on Mental Health and Substance Abuse, and send using this email address: garrett.burns@mahouse.gov. Note: Please address the Joint Committee directly. Example:

Dear Chairs and Members of the Committee on Mental Health and Substance Abuse,

Please refer to Bill Number H.4062 in the subject line or the body of your email. Make sure to include your full name and your town in Massachusetts.

Your personal story will be presented as evidence to the Joint Committee as they decide whether or not the bill moves forward. The sooner you can send your personal story, the better, since it is unclear when the committee will meet.

Important: Please send a copy of your email to your state senator and representatives.

If you live outside of Massachusetts, please follow the instructions above, and send your personal story of benzodiazepine harm to Chairs and Members of the Committee on Mental Health and Substance Abuse using the same email address: garrett.burns@mahouse.gov. Explain how this bill will affect your state/country. For example, if this bill passes in Massachusetts, you are hoping a similar bill will pass in your own state/country. Make sure to include the following information:

Your Full Name
Town and State (if you live within the US)
Country (if you live outside of the US)
E-mail address

Letting the Joint Committee and your senators and representatives know how benzodiazepines have harmed you or a loved one, and the bill’s importance for public health and safety, is crucial to getting the votes needed for Bill H.4062 to pass. Thank you for getting involved!

SILENCE = DEATH revisited & the benzo connection

3/13/2016

This week’s controversy about Hillary's claim that Nancy Reagan was a meaningful advocate and change-maker for AIDS policy in the 80’s brought back memories of hush-hush AIDS days in the 80’s and exploding AIDS activism in the late 80’s and early 90’s. Ron and Nancy Reagan had much more to do with the hushing, and nothing to do with latter-day advocacy other than inciting anger and inspiring protest. As for Hillary and Bill? I recall sitting at a chi-chi AMFAR dinner in NYC in the early 2000’s and witnessing actor and activist Richard Gere chastising Bill Clinton loudly and clearly for doing NOTHING to help the AIDS cause when he was President. Bill and Hillary sat at their table with frozen smiles on their faces. There was a moment of distinct discomfort. The moment passed, and the meal and (friendlier) celebrity speeches continued.

Despite a non-existent presidential policy in the (Bill) Clinton years, activist organizations like ACT-UP waged a battle to fast-track to market any drug that might lessen AIDS sufferers’ agony and possibly offer a cure. They scored some victories. In 1997, with Congress’ approval, the FDA initiated a program to bring promising drugs to market, allowing positive lab results to take the place of clinical trials. In the ensuing years, this has become a double-edged sword for the public-at-large. The flip side of AIDS victories are psychotropic drug nightmares.

What if we could go back in time? Perhaps if benzodiazepines had been studied thoroughly in the late 50’s for long-term efficacy and effects, they might never have been approved for market. Perhaps. At any rate, I would have liked to think that lessons were learned, and that in more recent years the FDA would not have allowed such short-sighted test-and-release practices for drugs that target and alter our brain chemistry. Unfortunately, it appears that the loosening of FDA standards has made things worse. As a matter of fact, between 2008 and 2015, sixteen new psychiatric drugs were fast-tracked to market.

Last week, I interviewed Danish scientist Peter Gotzsche for the film. Gotzsche has been a tireless advocate for pharmaceutical industry transparency and properly-run clinical trials that do, indeed, demand study of the long-term effects of a drug before it is introduced to the market. But the FDA does not appear to be listening. It is far too easy for drug-makers to focus on short-term effects. Long-term effects and injury, be damned, as those with benzodiazepine damage know only too well. On the global scene, there are now millions of people who have been “adversely affected,” i.e., injured, even destroyed, by benzodiazepines and other psychotropic drugs. A lax FDA and an avaricious Big Pharma, holding themselves up as the arbiters of correct drug fact and education, lead doctors and practitioners to ignore better-researched evidence, to look the other way, and to continue to write misbegotten prescriptions for benzodiazepines.

It’s going to be an interesting year. Who has the guts to take on Big Pharma? Bernie has been outspoken about price-gouging, but not about pharmaceutical injury. Oh, what we can teach him! I am certain that he would make a willing student. No way do I think that there is any other candidate who is free and clear from Big Pharma ($$$) influence. Sorry Hill, revisionist history will not change your record of support from Wall Street (Big Pharma’s best friend). Scary to think I’ll have to vote for Hillary if Bernie does not get the Democratic nod at the July convention. But I’ll do it. Of course, I’ll do it. The Republican alternative is just too frightening to consider.

One way or the other, let’s prepare to enlighten and educate our new president. All hail a benzo-wise Commander-in-Chief!

Trailers and T-Shirts!

2/2/2016

After poring through footage, selecting content that we thought would pull together for a good trailer, we did it! Editor Cam Clendaniel cut a 2:56 minute piece that we think gives a good idea of the direction we’re headed in with the film. To actually complete the film, we have much more filming to do, and there will be many bills to pay along the way.

Women Make Movies is our fiscal sponsor, and donations to As Prescribed though them are 100% tax deductible. We hope that donations will come in fast and furious. But I know from past experience that a lot of people have problems with the scroll prompt on the WMM website. The list of films goes in alphabetical order, so you would think we would be near the top. Who knew that there would be so many other documentaries starting with the letter A? So we decided that we had better come up with something that was a little more user-friendly, and joined forces with BonfireFunds to roll out a T-shirt campaign. Oh, I’m hoping that tons of people will watch our new trailer, join our cause, and help get this film made —and buy a new T-shirt (or 2)!

Exploiting the Most Vulnerable: Babies on Benzos

11/11/2015

Jax and Jennie sharing a morning laugh. (Photo by Anders Carlson)

Jax meets with his doctor at the University of Colorado Hospital.
(Photo by Anders Carlson)

We succeeded in getting deep and arresting footage in Colorado this month. We visited our old friend Matt Samet, and our new friend Jennifer Bryant Roeder. Both opened up on camera, and shared compelling stories about their benzo journeys. The crew also headed to Colorado Springs, where we met two families whose children developed a form of epilepsy known as Dravet's Syndrome during infancy. One was diagnosed early on; one was not. But both were given benzodiazepines to treat their seizures.

I would defer to a doctor’s assurance that a benzodiazepine could, indeed, help to control seizures as crisis-management. But children who have Dravet’s are prescribed benzodiazepines to be taken daily. As a matter of fact, if you visit the Dravet Syndrome Foundation website, you will see that clobazam and clonazepam, two benzodiazepines, are at the top of the list for daily treatment protocol. You read that correctly — for daily treatment.

I shudder.

The families we met have seen that benzos make the syndrome worse, with more extreme, violent, and frightening seizures. For those who know what benzo tolerance and withdrawal is, you have privileged insight into the suffering babies and children on benzos endure. What does the Dravet establishment tell itself to continue this practice? And why does their chief advocacy organization in the US, the CT-based Dravet Syndrome Foundation, accept a protocol that results in drug-addicted, additionally damaged children?

Simply put, why are doctors prescribing benzodiazepines to infants and children for long-term use? Are these prescribing physicians being challenged? Are there any evidenced-based Dravet doctors actively and vocally speaking up about benzo effects and hazards? If not, why not?

These drugs are dangerous. They cause debilitating, life-changing harm. Babies on benzos? This cruel practice must stop.

Let's make noise! Let's be heard! Let's get this film made!

Feel free to get in touch!

Franny with her dad Sam. She is free from benzos
and responding well to CBD oil.
(Photo by Anders Carlson)

My Commitment to the Benzo Cause

8/14/2015

Filming on location in Utah: Jocelyn and her daughter Lucy with DP Scott Shelley and Sound Josh Miller

Awareness advocate and survivor Marjorie Meret Carmen, M.Ed., fresh
from a fact-finding tour in the UK

Why in the world would I have committed myself to making this film? All who have been exposed to the benzodiazepine scourge know it is a painful, gut-wrenching subject. The depth of misery involved is mammoth. Is this what audiences want to see? Aren’t we already exposed to boundless suffering in the world? But I must argue in favor of the greater documentary purpose. When documentaries force their way into the public arena and consciousness, woe and affliction are sometimes diminished, even conquered. Good things can happen. A blinded culture might begin to wake up and see.

But I still have to question my personal risk: Should I be doing this? What will the personal cost be? Why choose to surround myself with all this wretchedness when I could be devoting my energy and time to something positive and joyful? Why not make an uplifting film about the father-son duo I met not so long ago who have nobly dedicated themselves to saving endangered wolves? Or perhaps I should be making an upbeat film about the resurgence of hand-made arts. I could cover all the amazing creativity going on in my home region of the Berkshires. Or what about that film about Rita Pavone? Will someone please make a film about Rita Pavone? Because my calling is elsewhere.

I must make this film, this film about the hell that benzodiazepines have wrought in every developed nation around the world. Most benzo survivors have a graphic tale of unforgiving intensity and horror to tell, and those stories will be told. But there is much more to say and territory to cover to raise awareness, to change a system, and to wake up a culture that has not been willing to hear the message. People, by their very nature, do not like change. And we are talking about the need for sea change in public perception and practice.

The fact is, we are making sweet progress with the film. In July, the crew travelled to Utah to film benzo warrior Jocelyn and her family. Upon completion of the shoot in Utah, DP Scott Shelley told me that As Prescribed is the kind of important film that inspires him he get up in the morning, head to location, and film. In July we filmed in Boston and had a chance to hear first-hand about plans for a benzodiazepine awareness symposium in Bend, Oregon, in 2017. And what a joy it was to spend an afternoon with family and friends of survivor/advocate Geraldine. They swapped stories about their witness to Geraldine’s nightmare benzo journey, as well as their knowledge of the drug’s dangers, at a gathering to celebrate her hard-fought freedom from the benzo beast.

I head home after a shoot like this, and I say to myself, “This is worth it. Boy oh boy, is this ever worth it!”

So we forge ahead. I’ll sometimes shut off, shut it out, take a break from the negativity and nonsense that creeps in more often than I would like. I will meditate, do yoga, not answer the phone. I’ll come out on the other side intact. Fairly intact, that is. I don’t want to kid myself. I’m in for it. And I’m ready.

Now, just breathe…

hh

Feel free to get in touch!

Jocelyn taking a breathing break while filming

Check out Jocelyn’s Benzo Bullied video on YouTube :
Benzo Bullied -- you’re not crazy!
By littlemissperfect

Dear Doctor, What Do You Really Know About Benzos?

5/27/2015

Director Holly Hardman and Cinematographer Petr Cikhart with Dr. Jon Samet.

I’d like to introduce you to Gobbo Films' new documentary project, As Prescribed. I’d like to reach out to those who have had personal experience with benzodiazepines and have learned about the weaning process, as well as those who have observed someone managing a harrowing discontinuation process. I’d also very much like to reach the unlucky survivors whose doctors offered a rushed taper plan or, even worse, encouraged them to stop taking a benzodiazepine abruptly, forcing them into a cruel cold-turkey protracted withdrawal experience.

I hope that the film serves to enlighten, educate, and, in some meaningful way, to help end unnecessary suffering. There is much to do. One of my chief goals is to convince doctors and healthcare providers to do the right thing:

Doctors/healthcare providers need to support patients through an educated taper.
Doctors/healthcare providers need to consider whether or not they will continue to prescribe benzodiazepines for anything other than a short-term course (2 weeks maximum).

I’m a bit late starting this blog. I had plans to get this blog up and running in early January, but the site launch was delayed when I suffered a concussion this past December. On a pitch black winter night, interrupted for a few dazzling moments by a surprise fireworks display, I stepped off a deck while looking upward and fell smack dab onto flagstone — a direct hit to the left side of my skull. Fast forward through almost five months of unceasing post-concussion symptoms, and here I am feeling recovered, albeit a bit floaty with minor tinnitus.

   In some ways, my concussion experience wasn’t altogether dissimilar to benzo withdrawal. Though to my surprise, the concussion laid me out in a way that Klonopin discontinuation never did. Perhaps my brain will always be vulnerable. In the months following my accident, I was too dizzy and concussed to function well enough to go about my regular routine, though my neurologist assured me that I would get better if I just stayed away from computer screens (ha!) and stress (haha!) and found time to get plenty of rest (√ -- somehow managed that). But, and this is a huge BUT, there was no derealization, depersonalization, unceasing insomnia, weeks-long migraine headaches, irritable bowel syndrome, malfunctioning vagus nerve, spontaneous choking, tremors, incessant itching, akathisia, excruciating pain...I hope you get the picture. For those of you in the know, does it all sound too familiar?

      Let’s go back a few years — I was one of the lucky ones. I’m not saying that I was in any way lucky to have been prescribed Klonopin. Hardly. I was lucky because when I determined that there was no good reason to continue taking a medication that was given to me originally for CFS, then reintroduced after 9/11 for PTSD, my doctor supported my decision to stop. After all I was long past PTSD; I was feeling content and happy. I found the Ashton Manual on the internet, and my doctor listened when I told her about Dr. Heather Ashton’s research and the manual. Though there were complications, and it took longer than anticipated, I made it. Over 100 million prescriptions for benzodiazepines are written every year. It can be assumed that hundreds of thousands are in the throes of benzo tolerance and withdrawal without proper help or support from a doctor, and just as many whose central nervous systems are now being hijacked by the benzo beast.

   As a community of sufferers, survivors, and awareness advocates, those of us who know the flip side of benzo use need to let our doctors and healthcare providers know that when we told them we weren’t feeling well, we were not asking them to make us feel worse. We were never asking to have our CNS so alarmingly compromised or so fully damaged that much of our basic human functioning was effectively destroyed for months, even years. Let’s demand that members of the medical and psychiatric professions stop prescribing these medications with the misguided assurance that they are safe and non-addictive. They are anything but that.

   And to those who are still at the mercy of benzodiazepines, I say stay strong, be positive, and know that the brain wants to right the wrong. The brain is plastic, and wants to heal.

       And know that we can effect change if we join together and speak out!

         Please get in touch!

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