Our June 25, 2017 Letter to Broome County Executive Jason Garnar

We are tired of waiting for the county to take action. It is long past time for them to be responsible in their roles to protect the public. See our letter to County Executive Jason Garnar below. Be sure to click the news links to see what he thought should be done PRIOR to being elected.

We have been calling on the county to track and report overdose deaths and reversals since August of 2015. Here we are, nearly two years later, still waiting.

Call County Executive Garnar today and ask him when he’ll start doing all the things he was demanding of the last administration.

June 25, 2017

Jason Garnar
Broome County Executive
60 Hawley Street
Binghamton, NY 13901

Dear County Executive Jason Garnar,

On June 24, 2017 the Village of Johnson City Police issued a warning about a surge in heroin overdoses, including three fatalities. We thanked them for their proactive approach in alerting their community. Due to their proactive approach, Truth Pharm and STAP worked together to immediately respond by advertising, promoting and handing out life-saving Naloxone kits during a three-hour time-slot on Sunday. Twenty-four people were trained and obtained kits.

This is what the response to a public health emergency looks like.

Also, due to their proactive approach, the news media published stories about the overdoses and the handing out of Naloxone kits, which caused hundreds of people in Broome County to engage in conversations about the opioid epidemic. In addition, hundreds of people were educated about: the dangers of using alone; the need to call 911; a particularly strong or ‘bad’ batch of heroin that was circulating; harm reduction practices they could use to reduce overdoses; and the lifesaving medication Naloxone. Conversations that our community desperately needs. In addition, two people reached out to Truth Pharm and will be placed into inpatient treatment tomorrow.

On February 23, 2017 you attended our in-depth presentation to local elected officials outlining the dire need for both care and harm reduction approaches in Broome County. We also made it clear that tracking of overdose data – both deaths and successful revivals – is the responsibility of our county government and needs to be done accurately, consistently and actively reported to the public.

We have seen zero progress on this front. We have been making requests for this information since August of 2015, we are approaching two years since then, over one hundred deaths and thousands of overdoses with no change to the system.

Prior to being elected as County Executive, you agreed that the community should be notified. We have communications from you to us directly stating so and ridiculing the prior administration for not being responsible in doing so. And you made your opinion public to the media.  On August 12, 2016, WICZ started a report about overdoses with this line: “Broome County Executive Candidate Jason Garnar called for a public health warning on heroin overdoses Thursday night.” And later in the article included this as well, “Jason Garnar says it is a health risk when the public isn’t notified.” Garnar Calls for Public Health Warning   Garnar Wants Better Accounting by the County

On August 11, 2016, in an article published by the Press & Sun Bulletin: “First and foremost, Broome County needs to declare a public health emergency,” said Garnar, the Democrat challenging Preston in the November election. But “what I’m more concerned about is it seems our county executive is not saying anything about this. We should be doing everything possible to get the word out there that something is out there that is killing people left and right.” The website for that article includes a video of you stating how important it is for the County Executive to release CURRENT information to the public in order to save lives.  Garnar calls on Broome to Declare Opioid Emergency

It is nearly one year since you made those strong statements and you’ve been in office for six months. But, where is your action? Why aren’t you releasing notices to the public? You are now the one responsible to ensure the public is notified.

As we have in the past, we could provide multiple examples of other counties in New York State who are actively tracking and releasing overdose data, but we trust you can google and immediately find plenty of results just as easily as we can.

We also know this data already exists for the county. We recently learned that the county is planning to participate in a program to release all overdose data (deaths and reversals) to a mapping program run by the DEA. That mapped data will not be accessible by the public, but is utilized in drug investigations. We are beyond sickened to learn that the county is choosing to participate in an enforcement and further criminalization program as their priority over participating in issuing public health warnings and participating in harm reduction practices with data you ALREADY HAVE.

Your goal must be to save lives.

We are again requesting that the County Health Department immediately begin to take responsibility for counting the deaths of our loved ones due to substance use related causes and issuing that information to the public. This responsibility does not belong to the District Attorney, this is a health issue and belongs to our county health department.

We also want to remind you that funding from the state and federal government depends on accurately reporting both overdose and death data to state officials. We are being bypassed for funding, new programs and attention because our issues are not accurately reported.

Though it seems much of what was written in our letter of February 23, 2017, including working together cooperatively, has been ignored, we’ll attach the letter as a reminder of what we called for four months ago, please be sure to review request #3 which we’ll include below. The optimism we expressed in our letter is waning, but we as an organization continue to do the work necessary to save lives. You, as the County Executive, declared this opioid crisis a Public Health Emergency. With that declaration comes serious responsibility on your part.

  1. County Departments that responsibly track and publicize data in a timely manner including:
  • Naloxone uses by all departments and the number of doses required
  • Overdose deaths
  • Deaths by other causes, but linked to substance use
  • Criminal acts related to substance use disorders
  • Incarceration rates related to substance use disorders
  • Success rates of various forms of treatment
  • A public calendar of all events offered by providers, support groups and grassroots organizations
  • A comprehensive list of treatment options, modalities and services within our region, allowing individual organizations to add their information and website links

Sincerely,

Alexis Pleus
Founder and Executive Director

cc: Governor Andrew Cuomo, NYS Attorney General Eric Schneiderman, NYS Commissioner of Health Howard Zucker

Facebooktwittergoogle_plusredditpinterestlinkedinmail

6/1/16 – Our Letter to NY Assembly Ways and Means Committee regarding A9211 – the 90 Day Bill

Greetings,

I understand Bill A9211 is on the Ways and Means schedule for 6/1/16 (probably today as you read this). This bill would require insurance companies to pay for 90 days of inpatient addiction treatment when a physician says it is necessary.

I lost my son to a heroin overdose and there is no doubt in my mind his life would have been spared if it were not for insurance denial after insurance denial for the treatment he desperately needed.

But, it’s not just about my son. As I’m sure you are aware, many lives have been lost and we are losing more lives every single day.

We are a non-profit grassroots organization that works to reduce the stigma associated with addiction, educate about the disease of addiction and this health crisis and advocate for policy change.

We have thousands of members and unfortunately they come with thousands of stories of being denied treatment by their insurance carrier.

Our organization researched all of the bills related to heroin, opioids and addiction at the start of this session to find the bills that would have the greatest impact on the epidemic now – or basically, save the most lives. Of all the bills reviewed, the 90 Day Bill was the clear winner for having the greatest impact on this epidemic and in saving the most lives.

I, along with many of our volunteers, have met with many of you. Today I provided oral testimony at the Governor’s Heroin Task Force Forum in Binghamton, NY. In February I provided testimony in Penn Yan at the Senate’s Heroin Task Force. in April, one of our board members, Penny Stringfield provided testimony at the Senate Heroin Task Force in Binghamton, NY. We have read both reports produced by the Assembly and both reports produced by the Senate along with the 22 bills the Senate passed recently.

And will still say, little legislation has been presented that addresses the health needs of those addicted and who voluntarily ask for help. This 90 Day Bill stands out as being our greatest hope this session.

As far as budgetary concerns, we must consider the real cost of this epidemic and the costs to society and the tax payer now. We must find ways to require the medical industry who created this epidemic to respond responsibly, we must find ways to make the pharmaceutical industry pay for the damage they’ve caused and we must require insurers to cover the treatment for this life threatening illness no different than they do any other illness. These solutions will take the burden off of the New York State tax payer.

Some of the costs we must consider in NOT providing treatment are probation, incarceration, family court, criminal court, parole, rising crime rates, Hepatitis C treatment, foster care, adoption, family services, child protective services, family court, accidents, police enforcement, coroners and funerals. We are paying dearly, we are just not paying on the right end of this epidemic.

Furthermore, the cost of not providing effective treatment from the start, likely costs insurance carriers more. We know people who have gone through outpatient and short term stays 5-10 times and with a proven success rate of only 10%, it is no wonder. Add to that the toll it takes on the family and their health. And Hepatitis C treatments at $100k each.

Providing the type and length of treatment known to be effective from the onset makes sense. It makes sense because their lives are worth saving. It makes sense because it is how we treat all other illnesses. And it makes economic sense.

I’m attaching our Advocacy Agenda we have used for this session. The first page provides a snap shot of what happens when a person asks for help. The second page lists our asks.

We have worked very hard spending many days in Albany letting people know we are hoping for the passage of this bill this session. We request that you consider the positive impact this bill can have on families facing this addiction crisis as well as in protecting the tax payers of New York.

Feel free to contact us for any reason or if you have any questions.

Sincerely,
Alexis Pleus
Founder and Director

And all of the Rainmakers at Truth Pharm

Alexis Pleus
Founder
Truth Pharm

[/fusion_text] Facebooktwittergoogle_plusredditpinterestlinkedinmail

Calling All New York State Coalitions, Support Groups, Awareness Groups, Advocacy Groups

Greetings all!

I wonder if you’ll bear with me to hear a personal story.

Last fall, I attended the FedUp Rally, Facing Addiction and Hill Day which were all back to back in D.C. All incredibly powerful events where I learned so much and was inspired by speaker after speaker.

But, believe it or not, the most inspiring 3 hours of the entire 5 days I was in Washington D.C. was spent in a room with 20 people pulled together by Nancy Carter Williams. Who were they? They were people hand selected by Nancy that she felt have accomplished incredible feats, have developed unique ways to raise awareness and were having a powerful impact on the opioid epidemic and BOY was she right! I was invited to speak and present for Truth Pharm and by the time it was my turn to speak, I felt minuscule in comparison to what I had heard from the people who went before me.

Two of the most inspiring people we heard from that day were two women from Kentucky. They told of a story about several bills being up for vote in Kentucky that everyone was sure would pass. They said they did the thing we all do – the shared the information on facebook, they made phone calls, sent emails and it seemed these bills would pass, after all, the state was facing an epidemic and these bills were SO important. When it came time for the bills to be voted on, they did not pass and the group was devastated. A group of moms decided the next session of the legislature, they would be at the capitol every day the legislature was in session and they would NOT leave until the bills passed. And they did just that.

I know many of us have different opinions about what can or should be done. There is a LOT Truth Pharm wants from our state government, but one thing I THINK we would all agree on is that currently, insurers are controlling how much treatment our loved ones get, and the amount of time is woefully low. We are seeing an average of 9 days being approved by insurance, which sets our loved ones up for a 90% relapse rate.

There is a bill in our State Senate AND Assembly this year that we have been calling “The 90 Day Bill”. Remarkably, the bill that was written in the Senate, was written by a Republican and our Senate is Republican led and the bill written in the Assembly was written by a Democrat and our Assembly is Democrat led.

This means, two things. 1. a shorter span of time to move the bill forward and 2. the bill has a fantastic chance of passing.

But, it will NOT pass this session unless we can get the bill to move forward. And to get it to move forward, we need face to face time with our political leaders asking them to please sign on as cosponsors and to urge their colleagues to move the bill forward.

Truth Pharm has taken 4 trips to Albany and we have several more dates coming up: May 10, 11, 24 and June 2 and 24th and we may add more days. You could go with us, meet us there, plan your own trip, go separately, whatever you like, but we should all work together to make this happen. We can only do this with everyone’s help.

People were telling us yesterday we had a good chance of getting this passed ‘next session’… let’s make it happen THIS SESSION!

If you’d like to be involved, please fill out this survey: Click Here for Survey.

To see Truth Pharm’s Advocacy Agenda for 2016, click here.

Facebooktwittergoogle_plusredditpinterestlinkedinmail

Join us to Advocate for Policy Changes in Albany!

We are visiting Albany to advocate for policy change on May 3rd, May 10th and May 11th.

It is very important that our political leaders hear from us and the struggles we face with finding treatment and having it be affordable and/or approved by our insurance.

Here is our agenda for advocacy for 2016:

Advocacy Agenda for 2016

New York State is not immune to the opioid and heroin epidemic plaguing our country which has progressed now to a crisis. While we have been ahead of the curve on implementation of some important issues such as the Good Samaritan Law and Naloxone access, we remain behind in health parity and treatment access.

As an advocacy organization, we are reminded daily of the many obstacles people seeking help encounter. Here is the typical sequence of events experienced by an individual who has said “I want help”:

  1. They don’t know where to turn and often go to the Emergency Room. Emergency Rooms do not admit for detox, do not transfer patients to detox, rarely line up treatment appointments and often do not give information regarding access to treatment or evaluations.
  2. The individual attempts to schedule an evaluation. The wait time for evaluation appointments in NY varies widely, from 2 days to 5 weeks.
  3. They are most often referred to outpatient treatment, which is known to have a 90% relapse rate.
  4. Co-pays for outpatient treatment are a huge financial burden. One mother recently reported her son was remanded to intensive outpatient treatment 5 days per week. With private insurance, the co-pay is $40 per visit. At $200/week the bill is higher than her mortgage and electric bill combined.
  5. If the person goes to inpatient treatment, there is little information about what the facility offers or provides. Many people report arriving at a facility only to be told ‘you need to detox first’ or the opposite ‘you don’t have enough drugs in your system’. One family said a treatment facility employee suggested the parents take their son to make a purchase so he could shoot up and then he could be admitted.
  6. If they are admitted for detox, few facilities are offering medically assisted humane detox. Even those that are providing it are often saying the person is ‘done detoxing’ after 2-3 days. We had one gentleman told he was ‘done’ less than 48 hours after being admitted.
  7. If the treatment center finds out Medicaid or the insurance will not pay for the stay, the person is immediately asked to leave with no taper from the Suboxone they were started on and no direct link to their next service provider.
  8. For inpatient treatment, insurers in New York are typically only approving 7-14 days of treatment. The average seems to hover around 9 to 10 days. We have not heard of a single family with private insurance or Medicaid that has been provided over 21 days at an inpatient facility.
  9. There are families losing loved ones while they wait for treatment.

Though we believe a multi-faceted approach will ultimately be necessary to conquer this epidemic, nothing is more important than saving those who are desperate for help now. We need our state government to take emergency measures to address those suffering and asking for help now.

Thank you for your time and also offer our help. If you need someone to speak at a hearing, provide testimony or advocate to your colleagues, please call on us. We will help.

We need the following emergency measures:

  1. Same day evaluations for those seeking help.
  2. A treatment protocol for persons taken to the emergency room after an overdose. Attached as “Best Practices for Medical Providers.
  3. Immediate access to treatment or a hospital stay until treatment is available.
  4. Humane, medical detox.
  5. Insurers MUST be required to pay for the type and length of treatment known to be effective. Anyone seeking opioid addiction treatment should be granted 90 days of inpatient treatment at a minimum.
  6. New York State must increase the reimbursement rates so that treatment centers can open and operate here.
  7. A one call system.

These bills would offer a high impact with low cost to New York and are non-controversial:

  1. Require all first responders, fire and police to carry Naloxone.
  2. Require hospitals to provide persons who have overdosed and any support person with them with Naloxone training as well as a kit to take home.
  3. Require all treatment facilities, outpatient clinics and residential facilities:
    1. to have all staff trained in the administration of Naloxone and to have Naloxone on premises;
    2. to follow up after discharge at 14, 30, 60 and 90 days to determine relapse rates and report these statistics to OASAS;
    3. to provide patient and support persons with Naloxone training as well as a kit to take home upon discharge.

The following bills will have a significant impact on the epidemic:

Bill # Description Sponsor
S6478A/ A9211 Requires insurance companies to provide at least ninety days of rehabilitation services to an insured upon a doctor’s prescription Senator Ritchie/ Assemblyman Stirpe
S651 Relates to continuing medical education requirements for doctors, nurses and pharmacists; requires three hours of training on the prevention, treatment and mitigation of opiate analgesics and psychotropic drug addiction. Senator Kennedy
S647 Requires the department to draft guidelines for the transition of patients from substances with a high risk of addiction to those with a low risk. Senator Kennedy
S660 Requires disclosure of addiction risks for certain prescription drugs; requires physicians, nurses and pharmacists to provide information on prevention, mitigation and treatment of prescription drug addiction and to have the patient sign a form acknowledging education of such risks. Senator Kennedy
Facebooktwittergoogle_plusredditpinterestlinkedinmail

Framing an Overdose Death

Another overdose death in Broome County. A very young man at the age of 22 did not wake up yesterday (2/6/16).
 
I am getting multiple versions of what happened with this young man. Some are saying he was at ACC and left because he couldn’t take the detox. Another said he just completed short term inpatient treatment at New Horizons and was waiting for a bed at Fairview. Another said he got kicked out of treatment for testing positive for suboxone (which he was apparently not prescribed). Another is saying it was her son’s roommate at Fairview and he overdosed there.

 
In the end, I can say, I’ve been at meeting after meeting where professionals and treatment providers call this ‘failing treatment’ or paint a picture that puts the blame on the person for being ‘unsuccessful’ in maintaining sobriety. They’ll say ‘he wasn’t serious about sobriety’. They will allow his death to be his fault and his fault alone.
 
I am going to say, this young man, like so many people in this country, clearly wanted to stop using heroin, but was not given the medical attention and treatments known to be effective, the length of time in treatment known to be effective, was not provided with the level of care, transfer of care or follow-up necessary and proven to be effective. Our system and the lack of proper medical treatment failed him and he died because of it.
 
For those who don’t know, detoxing from opioids or heroin is extremely painful to the bones and muscles in your body. I heard one person describe it as feeling as if every bone in their body was breaking. Add to that nerve pain, violent shaking, chills, vomiting, diarrhea, sweats, fear, agitation, severe cravings and severe anxiety.
 
There is a method for a person to be medically detoxed. A person can be given a tapering dose of suboxone to relieve their symptoms and make them more comfortable. Suboxone also curbs the intense cravings they have. In the US, it has been determined for some insane reason, this is not a medically necessary treatment. This is based on a determination that opioid withdrawal is ‘in most cases’ non-life threatening. Somehow the medical and insurance industries have been able to take this and run with it so that people addicted to opioids going through withdrawal are not granted the medicines known to be successful in easing their pain and making them more likely to be successful in both detox and treatment.
 
Our only local detox option, the ACC (through no fault of its own) is a facility that cannot offer medically assisted detoxification. They can only offer over the counter medications and take the person to the hospital if their symptoms are severe to be given some medications to relieve some of their symptoms. Note, they are not given what is known to best relieve the symptoms of opioid withdrawal and the symptoms can still be severe.
 
Many people (we are told 4 out of 10) leave the ACC because they cannot endure the withdrawals. Again – the withdrawals they are enduring could be alleviated GREATLY if given a tapered dose of suboxone.
 
Other facilities locally won’t offer medically assisted detox because insurance won’t pay for it and they hold to the idea that it’s ‘not life threatening’.
 
For those who are struggling to not use while in treatment will get ‘kicked out’ of treatment for ‘failing’ by most facilities rather than being providing more treatment or changing the type of treatment.

IMG_6806

Here’s another fucked up thing about opioid withdrawals – long term use of opioids actually reduces your pain tolerance… so the pain that person is feeling is literally worse than what a non-opioid user would experience. And, opioids damage the regions of your brain that control judgement and motivation. So, you’ve got a person in withdrawals in severe pain, anxiety and experiencing severe cravings… they are NOT being given the medication known to be most successful in reducing these symptoms, they have a damaged sense of judgement and motivation and yet we are expecting them to have some sort of super human power, strength or ‘desire’ to outweigh all of that and stay to ‘muscle through’ a non-medically assisted gruesome detox.
 
We also know that 90 days of inpatient treatment is proven to be effective. We know there is a 90% relapse rate after short term (less than 14 days) of inpatient treatment.
 
So rather than having people say this young man at the age of 22 went AMA, was ‘unsuccessful’, ‘didn’t want it bad enough’, ‘wasn’t strong enough’ or ‘gave up’, let’s all do his family and him the honor of being honest and frank about what happened.
 
Here’s what happened – our system did not offer a young man with a substance use disorder, which is a medical condition, the medical treatment necessary and known to be effective so that he could be successful in recovery that he needed to overcome a disease which often leads to death.
 
We need to stop blaming people seeking treatment for being ‘unsuccessful’ ESPECIALLY when we are not providing them the treatment and medical assistance that is clinically proven to help them be.
 
We need to change the conversation.
 
Let’s commit to saying – this person died of an overdose because he was not provided the medical attention or treatments proven to be successful.
 
We don’t require diabetics to give up sugar before we’ll give them insulin. We don’t require smokers to quit smoking before we treat their cancer. We don’t require people with clogged arteries to stop eating unhealthy food before we’ll clean out their veins or put in stents. And if we try a treatment for any of these and it’s unsuccessful, we don’t paint the patient as not being strong enough or not wanting to be well – we try a different type of treatment or a more intensive level of treatment. 


Facebooktwittergoogle_plusredditpinterestlinkedinmail