NYS OASAS 5 Year Plan – Hearing Testimony – Truth Pharm’s Submission

Dear Commissioner Sanchez,

Truth Pharm is thankful for the work that has been done and for the ways in which NYS OASAS has been attempting to respond to the overdose and addiction healthcare crisis.

We are also concerned as we move forward with several issues.

We would like to provide our input for the statewide plan here:

1. We believe OASAS should require all treatment providers to make 1 week, 1 month, 3 month, 6 month and 1 year follow-up calls to all patients who have participated in their programs. Until we start tracking the success of a person to maintain recovery AFTER discharge, we will never know the true success rates of our programs.

2. OASAS should develop an survey device to give to every single patient who engages in treatment in New York State to determine how long it took them to get an evaluation, how long it took them to receive treatment, how long they received treatment, what the barriers to treatment were, if insurance created any barriers to receiving treatment, how they were treated by the treatment providers and if they received a warm handoff to any follow-up services they needed (to name a few). This should be a survey they can fill out and drop in the mail or login online to fill out. This is a low cost way for OASAS to understand the system of treatment in NY, to monitor outcomes and determine if we are improving systems or not.

3. ALL OASAS treatment providers should be required to inform every patient of the modalities of treatment with statistical outcomes available even if that provider does not provide it. Also, all providers should be required to provide MAT and all providers should have group or treatment therapies available OTHER than 12 step models.

4. We would like to see NY OASAS embrace an integrative harm reduction therapy model where we recognize the stages of change.

5. Every treatment provider who discharges a patient for relapse should be penalized.

6. NY OASAS needs to do away with the smoking ban at treatment providers and require treatment providers to create smoking areas for patients. No patient should ever be kicked out of treatment for smoking and accommodations should be made for those who do smoke.

7. We must have longer inpatient care available for those who seek it.

8. We must have 24/7 access to care.

9. Greater access to MAT.

10. Immediate access to treatment and/or harm reduction providers through Emergency Room visits.

11. Banish all total abstinence models of treatment by our treatment providers. It should be OPTIONAL for patients to engage in a total abstinence model of treatment.

12. Require all treatment facilities, outpatient clinics and residential facilities to have all staff trained in the administration of Naloxone and to have Naloxone on premises.

13. Require all treatment facilities, outpatient clinics and residential facilities to provide patient and family or support persons with Naloxone training as well as a kit to take home upon discharge.

14. The OASAS Bed Availability Dashboard should allow for search by treatment type.

15. The OASAS Bed Availability Dashboard needs a button added to report to OASAS when a provider’s beds listed is inaccurate.

16. Of all the things OASAS can/should provide, the most beneficial may be staff that would immediately handle insurance denials so that treatment providers and/or patients are not burdened with this.

17. OASAS should constantly review the criteria that treatment facilities are using to provide medication assisted treatment (MAT). Many are not following the standard protocol for prescribing.

18. OASAS and New York State need to stop pumping funding and money solely into the system that has already failed us and explore new providers, how grassroots organizations are able to improve the issues with the epidemic and/or are already providing services without funding.

19. All treatment should be followed up with referral to recovery coaches.

20. Expansion of recovery supports within communities.

21. Drug user health supports with harm reduction in every county.

22. Harm reduction education at all treatment centers.

A reminder that it has been the grassroots organizations that have brought many of the issues of this epidemic to the forefront. Many of these organizations continue to be unfunded despite the work they have done to make our elected officials and regulators aware of the issues and to provide services within our communities. OASAS needs to invest in these organizations and break down the barriers to provide funding. They are the backbone of the communities, they are the direct link to those impacted and we continue to do the work as we see money directed towards those who have allowed our children to die. We need to be supported.

Thank you,
Alexis Pleus
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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

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HOPE for the Southern Tier – from OTHER Corners of New York

I was blessed to be able to attend an event yesterday hosted by NYS OASAS in Albany.
 
I want everyone to know, the things we have been asking for in the Southern Tier, the things we have said and have been mocked for, ridiculed for, told we don’t know what we’re talking about… the things we have gone ahead and picked up and started doing ourselves – they’re happening in other areas.
 
On one hand, this may sound upsetting or disappointing… but, honestly, hearing all of the things other people are implementing GAVE ME HOPE.
 
We were right all along.. we were right to work on stigma. We were correct when we said people should have IMMEDIATE access to an evaluation 24/7. We were right when we said we need to give police a place to take people OTHER THAN JAIL. We were right when we said people need to be offered compassion. We were right when we said hospitals need to get involved. We were right when we said OPIOID addiction is DIFFERENT. We were right when we said this is AN EMERGENCY. We were right when we said the system is fucked up. They all said the same things WE have been saying…
 
Remember in February when we released our dream for Broome County – to become the first fully integrated harm reduction county in New York… welp, we missed the boat on being the first! Bummer. HOWEVER, how exciting is it to hear that others are doing this!?!? They are doing exactly what we outlined!!! Independent evaluations available 24/7, drug user health hubs, harm reduction models, meeting people where they’re at, providing MAT with no hoops and loops to jump through! It’s happening folks!!
 
It’s happening in other areas. I heard it with my own two ears! I teared up so many times hearing this amazing news! There is hope. I feel like we have to double down, we have to work ever harder now to make these things happen in the Southern Tier. We cannot give up hope. And apparently, this still will need to come from the grassroots movement because there has been NO progress with the County. Yes, I’ll be hated again (or still) for saying that, but look, truth is truth. I heard Jason Garnar say in his interview with Susan Arbetter yesterday that we lost 30 people so far this year.
 
That is 30 too many.
 
Health Care Crisis means Health Care Crisis. It means all hands on deck. It means, TAKE ACTION, TAKE RISKS, SAVE LIVES. It means NOW.
 
I was also asked at the meeting yesterday by a Southern Tier professional, “What does BOAC even do?” Good question.
 
Come join our #Rainmakers let’s keep making progress. Let’s change our system. Let’s get help in the Southern Tier. Let’s KEEP saving lives. 
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The Rainmakers’ Report 2/1/16 – 2/14/16

2/1/16 – Alexis attended the Community Foundation of South Central, NY grant workshop.

2/3/16 – Received our formal letter from the IRS approving our 501c3.

2/4/16 – Met with Pat Raube, Pastor of the First Presbyterian Church in Endicott regarding the rectory that may be vacated soon. Pat is interested in utilizing the house for something the community needs. We discussed the idea of the Flight House which she was excited by the prospect of. She will be performing a community needs assessment and will also be discussing with church members.

2/4/16 – Very excited a volunteer, Donna Wood-Craig has officially accepted the position of Truth Pharm’s Angel Volunteer Coordinator for the Oxford Police Department’s Road to Recovery Program.

2/8/16 – Had a phone interview with Michael King, Director of Outreach for Facing Addiction, the national organization for a position on their national outreach committee.

2/8/16 – Truth Pharm Board of Directors Meeting – Penny Stringfield, Rusty Griffiths, Tom Jackson and Alexis Pleus in attendance.

2/8/16 – Truth Pharm Volunteer meeting with 16 in attendance to discuss news, fundraising, grants and Amy Cruz’s “The Wings Project” proposal.

2/9/16 – Contacted by District Attorney Steve Cornwell to assist with this new Operation SAFE Program. He’s in need of volunteers to make calls for treatment placement and would like to partner with Truth Pharm.

2/11/16 – Dataflow donated all the printing services for our awareness event in Hancock.

2/11/16 – Amy Cruz attended Yvonne Lucia’s open house for her creative grief works open house.

2/12/16 – Several Truth Pharm Rainmakers attended the training session at District Attorney Steve Cornwell’s office to be trained in making phone calls for treatment placement through Operation SAFE.

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Political Advocacy (harvesting results):

2/2/16 – Alexis participated in a live teleconference with Michael Botticelli, Director of National Drug Control Policy at the White House and Richard Frank, Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services regarding Obama’s announcement earlier in the day of $1.1 billion in 2017 budget.

2/2/16 – Blog post regarding our visit with Donna Lupardo and our plans to work together. Donna Lupardo has stayed in touch over the past two weeks sending us articles we may be interested in.

2/4/16 – Interviewed by WICZ to comment on the NY Bed Availability Dashboard announced by Governor Cuomo 1/31/16.

2/9/16 – Met with Michal Kirsch, retired pediatrician to discuss my idea of requesting an executive order of the president and governor. He believes my assessment of the current situation is accurate and he is willing to proof read and help provide supporting data.

2/9/16 – Wrote to Governor Cuomo’s office regarding the Bed Availability Dashboard and the inaccurate information provided in addition to the fact that it is not being updated.

2/10/16 – Assemblyman Cliff Crouch attended our Awareness Event in Hancock, NY. Thank you Assemblyman Crouch!

2/11/16 – Received exciting news from Senator Thomas O’Mara’s office that we have been selected to provide oral testimony at the Senate Joint Task Force on Heroin and Opioid Addiction Roundtable in Penn Yan on 2/23/16.

plant_seedsEducation & Awareness (planting seeds):

2/1/16 – Met with Hancock representative from the Mayor’s office, Police Chief, Fire Chief and Director of Ambulance Services to discuss systems in place. Police are carrying Naloxone. Ambulance services is an advanced life support agency, so they have it as well. The fire department is currently working on registering and carrying. The police chief has inquired in the past about having a prescription drop box and offered that he would look into it further. We suggested they might want to contact Walgreens which is moving into the Rite Aid store soon because they are supposed to have prescription drop boxes to let them know there is a need. The Mayor’s office offered to provide a robocall regarding our event next week. We’ll send them the data. It was suggested we contact the Hancock Telephone Company to have an announcement played during the weather.

2/1/16 – Directed an Oxford woman to free Naloxone training at STAP via an email inquiry from her and she got trained and got a kit.

2/3/16 – Interviewed by Don Mathisen of WIOX radio an NPR station in Roxbury, NY. The program will air next week.

2/5/16 – Met with Sarah at the Volunteers of America shelter in Binghamton. She would like Truth Pharm to provide awareness education for her staff.

2/7/16 – Met with Kim Myers to present our Best Practices for Hospitals and Medical Providers. Kim will be presenting this to the CEO and members of the board of directors at Lourdes. We also discussed The Flight House and Kim is interested in assisting with fundraising if we move forward with the project. She asked that we prepare a program outline, determine zoning requirements, get insurance quotes and operating expenses.

2/8/16 – Wrote “Framing an Overdose” about a boy, Dajen Edwards who died of an overdose in Binghamton on 2/6/16.

2/9/16 – Alexis, Dannielle Swart and Al Roberts attended the WSKG community Conversation on the Heroin Epidemic.

2/10/16 – Rainmaker Dannielle Swart attended the Community Awareness event in Sidney, NY.

2/11/16 – Held our first Awareness Event for our Community Response Plan in Hancock, NY. Was very well received with about 70 people in attendance and excellent media coverage including the Kingfisher Project, WICZ, The Walton Reporter and the Hancock Herald. Assemblyman Cliff Crouch surprised us and came and spoke for a short time to give a summary of his efforts on this issue.

2/11/16 – News story by WICZ about the Awareness Event in Hancock, NY.

2/12/16 – Met with Melissa Martin at the counseling center at SUNY Broome to discuss ways we can partner together. She will invite us to provide some awareness information at upcoming common hour programs.

36 facebook posts of news articles, research reports, political advocacy, 8 awareness or fundraising events, 1 Memorials to lost loved ones, 3 stories of recovery, 7 pictures or blog posts, 2 memes. Over 87,000 people reached through posts. Over 800 shares. Now 2443 “Likes” on public facebook page. 135 followers on Twitter. 11 loved ones added to the Map of Lost Loved Ones.

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Treatment Access, Recovery and Support for Individuals and Families (growing recoverees):

2/3/16 – Helped send a gal to long term treatment out of the state.

2/4/16 – Visited a 20 year old young man at the Broome County Jail per his family’s request and because he is a friend of our family to see if he’s interested in treatment. He is, so we contacted the District Attorney. We also told the family to write letters on his behalf to the judge, the DA and the Public Defender.

2/4/16 – A mother contacted us 2/2/16 – she took her daughter to Binghamton General after learning she was a heroin addict and she (the daughter) wanted detox. The hospital did not keep her. Sent her home after a couple hours and suggested he call New Horizons for an evaluation which would take several days to get. 2/3/16 we emailed her and let her know to take her daughter for a fast track appointment (She was never told about this possibility). She could not get her daughter going until late morning – New Horizons told her it was too late for a fast track appointment. The same day she had extreme anxiety and pain as she was trying to detox herself at home. The mother took her to the ER again and again they sent her home. 2/4/16 Truth Pharm got long term treatment lined up out of town young woman (20 years) who was willing and anxious to go. The mother took her to the New Horizons fast track evaluation hoping she could at least get detox until she went to long term treatment. New Horizons discouraged the daughter from leaving the area for long term treatment and instead offered her 14 days of inpatient treatment and suggested afterwards, she could attend New Horizons outpatient treatment while staying at Fairview. The daughter accepted the offer.

2/9/16 – Spoke to a young man about his options. He had a warrant for his arrest. He decided to turn himself in and we told him we would contact the DA for him which we did. The DA said he will advocate for drug court for him and to have his mom write to his assigned counsel and the ADA and ask for the same. We explained to the DA this young man truly needs long term treatment to start. He said that can be arranged and for the family to advocate for it.

2/10/16 – Helped a 22 year old Broome County gentleman get a bad at Syracuse Behavioral Health. He was not able or willing to leave the area for treatment, so opted for local. We checked the bed availability dashboard which listed 5 beds for medical detox at Syracuse Behavioral Health. They did a phone screening and said he qualified for treatment, but then told him it would be a three week wait. We contacted them to ask why a 3 week wait when the Dashboard listed 5 beds. We were contacted shortly after and told a bed ‘opened up’ and he could be admitted the next day. He planned to go for as long as they would keep him. Once he got there they said actually, insurance won’t cover your stay because ‘it’s elective’ to be detoxed, so you’ll have to pay $400 per day out of pocket. He decided to stay anyways. He stayed 26 hours and said the staff had such bad attitudes and treated everyone like second class citizens, he could not take the mistreatment and left. He said 90% of the people there are court mandated and the staff treat the patients poorly.

2/11/16 – Received an update from a Syracuse mom who originally contacted us 1/17/16. Her son was notified he is 1 – 2 weeks away from a bed at St. Christopher’s. Almost 4 weeks’ wait time for treatment because he does not have private insurance.

2/12/16 – Got treatment lined up for gentleman who was housed with Opportunities for Broome who requested help with the District Attorney’s program, but they could not find treatment for him quickly enough. Discussed with volunteer who was working on placement from DA’s side as well as the DA who said to go ahead and start a fundraiser and the DA’s office would help spread the word. 2/12/16 started the fundraiser for 55 year old gentleman to go to treatment, lined up detox for him in Long Island. 2/13/16 picked the gentleman up and took him to the bus station to go to Long Island to be admitted into the medical detox program there.

2/12/16 – Had several rainmakers attend the District Attorney’s call for help meeting for his SAFE Program.

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Broome County Losses:

2/6/16 – We learned of a 22  year old young man who had just finished New Horizons inpatient treatment and was staying at Fairview who relapsed and was to return to ACC. He chose not to go in and overdosed that night. He did not make it. Rest in peace young man.

2/11/16 – A 26 year old young man lost his life to an overdose. He was a father of two children.

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Thank you to Governor Cuomo’s Office and OASAS – Attention to the Bed Availability Dashboard

On January 31, 2016, Governor Cuomo announced a new tool to help with the search for an addiction treatment bed in New York State.  Governor Cuomo Unveils New Tool to Guide New Yorkers to Addiction Treatment. The database was to provide up to date information about treatment beds available across New York state which would be updated ‘live’. In fact, according to the Governor’s press release it would be updated 24/7. This would save other treatment facilities, people seeking treatment and families the frustration of calling many facilities just to find their beds are full.

When we first reviewed the tool we were pleased that at least it DOES show what a lack of treatment availability there is in New York. Albeit sad, we are hoping that our elected officials would search this and see how little help is out there, no matter what your situation. If you’re a parent searching for your son or daughter, of course you will go to the ends of the earth, but what about those searching for help who cannot get a ride to a facility 5 hours away?

We were also a bit dismayed by the lack of the ability to search by bed or facility type along with no glossary for those who do not understand what the difference is between the treatment types listed such as “Intensive Residential” versus “Inpatient Rehab” or “Medically Monitored Withdrawal” versus “Med Sup Withdrawal”.

Screenshot 2016-02-21 09.20.59In reality, this is a great tool they’ve provided and we believe with some work, it can help people as they search for treatment, but as it stands today, it is not helpful to the person who is desperate for help or the parent who has just learned their child is addicted to opiates and is not privy to the jargon terms of the industry.

We want four items added:

  1. A mileage indicator from your zip code to the facilities found.
  2. The ability to search by facility or bed type.
  3. A glossary of bed or facility types.
  4. The ability to click and send a report to OASAS and the Governor’s Office if no bed is found within 50 miles of your home zip code and it should provide you with a receipt or email confirmation of your report submission.

We must have a way to continually remind them of how difficult help is to find.

By February 9th, we found there were two serious issues even attempting to use the tool as it was 1. Many facilities were not updating their information. 2. Some would list several beds, yet if you called them, they would tell you there was a multi-week waiting period.

Truth Pharm searched for someone to talk to about this issue and after multiple phone calls, found that no one knew who we should contact to discuss the issues, so we contacted the Governor’s office. Our note to the Governor

We are actually impressed! They forwarded our email to OASAS and asked them to address the issue. A contact has now been added to the bottom of the website and we were forwarded several contacts we can make if the dashboard is not being updated or does not reflect accurate data. Letter from OASAS

My favorite line from their email: “As an additional incentive, delinquent/lazy providers have been warned that failure to comply with this daily requirement may result in daily financial penalties.”

Truth Pharm says BRAVO to OASAS on that one!!!

Please keep us posted on this tool – if it works for you, if it doesn’t, if you notice that certain providers are not updating their listing.

This is the link to the tool: Bed Availability Dashboard

We want to thank Governor Cuomo and OASAS for their excellent attention to this matter.

We also want to take this opportunity to remind them, real progress will happen when the Governor promises and provides treatment for all within 50 miles of your zip code. If there is not facility, you should be allowed to go to and be admitted in the nearest hospital, no questions asked. This is what we are fighting for. This is a medical condition proven to be deadly if untreated. If someone wants treatment, they should get that treatment on demand.

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