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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The Mirage of the Passage of CARA

July 14th, 2016

Yesterday, in a rare instance of bipartisanship, the Senate passed CARA by a 92-2 vote after the same passed just as easily in the House last week. The Comprehensive Addiction and Recovery Act which came to be known as CARA begins to turn the government away from the war on drugs tactics and mass incarceration and more towards viewing addiction as a disease.

Many organizations, including Truth Pharm, have spent time advocating for the bill, writing letters, signing petitions, making calls and spending time on the hill speaking to our political leaders about supporting the bill. Not only the bill though, but the budgetary means to support the bill and to put the plans presented into action.

We are proud to say that Senator Chuck Schumer in upstate New York vocalized his concerns regarding the passage of the bill without funding stating, “we believe you’ve got to walk the walk, not just talk the talk.”

I was fortunate to hear Congressman Paul Tonko of New York’s Capital Region speak in Albany at a forum with Michael Botticelli, Director of the Office of National Drug Control Policy. Rep. Tonko said, as a governmental representative, he was sick to death of having family after family tell their heartbreaking stories of losing their loved one to this epidemic. He was tired of having elected officials parade our grief with little to no real action. He said, “we must respond in earnest to these gut wrenching stories.” He said that means providing FUNDING for CARA, not just passing it. “Passage without funding means nothing,” he said.

President Obama estimated that to fully implement the plans put forth by CARA, we would need $1.1 billion dollars. Last week, Democrats pushed to include at least $900 million in the passage of the bill to support implementation. Those numbers should not surprise anyone. This is a national health crisis.

Unfortunately, that did not happen. CARA passed, but lacks the funding needed to implement the proposed methods to address the epidemic.

So, while we celebrate the passage of this incredible bill that is a desperately needed change of direction, we are saddened and a little sickened that it is being celebrated and bragged about by so many who voted down the funding to support it.

Shame. We are partners with other organizations and have been involved in the conversations trying to decide if they should issue a statement of gratitude for the passage of CARA or state the truth; this is a bill of empty promise. We have grappled with the same.

This is a national health crisis. One which the government had a hand in starting by being irresponsible with their duties at the FDA and one which they perpetuate by a lack of response. We have a pharmaceutical industry outpacing all others in profit while our death tolls climb at a parallel rate. The government has been aware of this issue for at least a decade and is just now responding. States are scrambling to put controls in place to limit the prescribing of narcotic painkillers since the federal government continues to shirk its responsibility. As limits are put in place, the supply of heroin simply increases and the death toll slope gets a little steeper and the government can’t manage to capture even 10% of the heroin that comes into our country, per their own data.

The death toll of this epidemic has surpassed (by far) that of the AIDS epidemic and with less response. We have families going into debt, losing their savings, retirement, health, peace and sanity while their children are dying before their eyes. We get denials from insurance companies, discrimination from hospitals, inadequate and outdated treatment or provided no beds at all. The jails are filling, our children have a disease we cannot get treatment for, children are being orphaned and the path of destruction gets wider each day. It will be generations before we recover from the damage of this man made, doctor condoned, FDA approved, pharmaceutical windfall of an epidemic.

And our government has decided to wait several more months before funding the best chance we’ve had at turning this epidemic around.  Another six months. Another 50,000 lives. More orphans. More incarceration. More people suffering with a disease we are not treating.

At the end of the day, we decided, the truth must be told.

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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.

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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. 


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Heroin epidemic: Encouraging treatment

Alexis Pleus lost her son to a heroin overdose last year.

She says along with helping addicts find treatment, society must eliminate the negative stigma attached to addiction to help encourage users to seek help.

“When Jeff passed away, I learned within 24 hours that I didn’t want to tell anyone how he had died because of the way people treated me,” said Pleus. “I started Truth Pharm. We want to work on reducing the stigma, which is really important to me because the less we judge people who have addictions, the more likely they are to reach out for help.”

Truth Pharm hopes to assist the sheriff’s office to get the Angels program rolling — but there are some road blocks.

“As soon as the bed spaces come up, I think we’ll be in good order then,” said Harder.

When Action News asked if the Angels Program could happen in the county without more inpatient centers opening locally, Harder said he wasn’t sure.

“Good question,” he said. “I don’t know yet.”

Harder has ideas of where to build a new treatment facility.

“They want to close down the Broome Developmental Center, why not make that a treatment center?” said Harder. “You’ve got the state hospital, why not go into a treatment center for there? The big thing is cost. That’s what’s holding the whole thing up it seems.”

Pleus said the county could look at the heroin epidemic as an opportunity to lead.

“Rather than being upset that we have an epidemic or upset that we have this addiction crisis, we could be the county that’s looked on positively by putting money into the issue, trying to get people that are addicted treatment, trying to turn this epidemic around, and showing care and love,” said Pleus. “It doesn’t have to be negative, it could be positive.”

See the full report By Julianne Peixoto here.

 

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