​DianDiannee Carden Glennnee Carden Glenn

DNovember 30th, 2016      
​Diannee Carden Glenn

“Those people will steal you blind,” said the hair stylist as I sat in the chair.
She and I had been discussing my upcoming trip to San Diego, a city she was familiar with. After she shared with me a list of San Diego’s best restaurants and “have to see” sites, she asked me why I was going.
I told her it was to attend the National Harm Reduction Conference, so we talked a little bit about what harm reduction means, and why I was involved in advocating for people who use drugs, particularly people who inject.
That’s when I told her that it was my oldest son’s 45th birthday that day; and so our conversation turned to Michael’s death four years ago, due to a heroin overdose, with prescription drugs and alcohol also involved.
Most people can find examples of difficulties with drugs from their own lives, either directly or through the experiences of others they know. The hair stylist told me about a friend of hers.
The friend had two adult children, both of whom were suffering with substance use disorders. In frustration, this friend kicked them both out of the house and changed the locks on the door. Some days, this friend finds one of her sons asleep on the sidewalk in front of her home, but he is not allowed inside and has to leave when the sun comes up.
That’s when the hair stylist said, “Those people will steal you blind.”
Now, I get the general idea of what “steal you blind” means, but after hearing it like this, I looked it up: The official definition is to “rob or cheat someone in a comprehensive or merciless way.”
Many of us whose loved ones have struggled with substance use disorders can relate to the feeling of having them take things from us that were not theirs to take. In my case, I was on first-name terms with the local pawn dealer from having to go to him to retrieve some of the same musical instruments over and over again.
But let’s describe what happened accurately. I wasn’t “stolen blind.” The act was neither comprehensive, nor was it merciless. It was not deliberate cruelty or disrespect. Rather, I have come to understand, it was about desperation and fear.
It was about the fear of going without heroin, for reasons both psychological and physical—of stomach cramps, uncontrollable diarrhea, hot-and-cold sweats and “dope-sickness.” Perhaps the fear of a world that seemed unbearably harsh without the comfort of a drug.
And when you understand that someone has done something they shouldn’t because they were frightened, it becomes very difficult to speak of them in that accusing tone.
But I didn’t say any of that to the stylist.
***
“Oh yeah, I know who they are,” said the gray-haired, robustly built Uber driver. “They’re the ones who need to find something better to do with their lives, like a hobby or something, to deal with their problems instead of drugs.”
He looked rather as if he was medicated for his high blood pressure or high cholesterol to ensure his own long life.
I leant against the back seat of his car, taking deep breaths, and absorbed his words, which had come out after I answered his first question: “Why are you visiting San Diego?”
Having just left about 1,500 advocates for change and a day chock-full of discussions about empathy, understanding and stigma, I wondered what I could say to this man in the five minutes I had left in his company.
My friend, who was with me in the back seat, made eye-contact with me and responded on my behalf: “If it were only that easy…”
During the uncomfortable silence that hung in the car after that, we agreed without speaking that this one was better to leave alone—there just wasn’t time for the kind of discussion we needed to have. We discussed the weather in San Diego for the remainder of our ride.
But again, I was frustrated with myself. There, right in front of me, had been the opportunity to have a debate, to stand up for my work, my story and my beliefs. I knew that if, in answer to his question, I had said we were there to support people with breast cancer, I would have immediately been perceived as an angel of mercy—not viewed with distaste, as an enabler of those who “did it to themselves.”
***
“What did I tell you?” said my first responder acquaintance.
He had just responded to an address in North Carolina he was familiar with, having been there twice before.
But this time, it was too late. The young man did not recover from his heroin overdose following two doses of naloxone.
“What did I tell you?” said the first responder. “The first two saves were a waste of time, when I could have provided lifesaving care to someone who actually deserved it.”
The hair stylist and the Uber driver might well have been little acquainted with the issues around drugs, substance use disorders and harm reduction. But this was a health care provider, one with whom I had had many discussions about overdose, Narcan and saving a life with no judgment—lengthy talks about who deserves and who does not deserve (the answer is nobody) another chance to live.
This time, I really couldn’t believe what I had just heard. I was speechless.
***
During the short time-span in which I had all three of these encounters, I spent the better part of a week with folks from across my country and from other countries discussing the humanization and non-judgmental care of people with substance use disorders. Each day that week, I felt elated and excited. This was my tribe—these people thought like me, had goals for change like me, and loved unconditionally like me.
What we didn’t address so much—at least not in the meetings I attended—was what it is in our society that keeps us from our goals.
It isn’t the cost of lifesaving drugs. It isn’t the lack of financial support for harm reduction organizations. What keeps us from being abundantly successful in providing this underserved population that we love with what they need to reach their potential is the stigma that society still harbors for them—one hairdresser, one Uber driver, one health care professional at a time.
I’m disappointed in myself that I couldn’t find the words, in those circumstances, to change any of their minds. But I think many other harm reductionists may share my feeling.
.We must know that 1,500 activists hugging each other and celebrating our successes is good, is merited, but isn’t enough. It isn’t enough for me to go to conferences of like-minded folks who are mostly all on the same page and a great encouragement to each other.
Until we can find ways to reach the people in our society who have no connection to this echo-chamber—ways to help them see that people who use drugs have the same feelings, needs, compassion and potential as anyone else—we haven’t succeeded.
Of course we are not going to change every Uber driver’s mind about addiction, but we should find the fortitude to frankly discuss the issues with him, even if it is only for five minutes. We couldspeak out enough to encourage the hairdresser to rethink her position on substance use—to see it, even if just for a moment, through the eyes of her friend’s son. We must be able to impress on the health care provider, never mind hurting his feelings, that every single person deserves the chance that naloxone brings—because would any of us stop to consider whether a person “deserved” it before pulling them out of the path of an oncoming truck?
I need to do better. Most of us need to do better. If we can’t convince those we encounter in our daily lives to recognize drug users as people, then we are, as my grandmother would say, just “spitting in the wind.”

Diannee Carden Glenn is a grandma who put down her quilting and became an advocate for harm reduction after her son, Michael, overdosed. She is a member of the Florida Viral Hepatitis Planning Committee and affiliated with H.E.A.L.S of Florida. She is the board president of North Carolina Harm Reduction Coalition and secretary of Pitt County Coalition on Substance Abuse. She writes and speaks about Michael, his passions, his shortcomings, his death and the effect it had on her family.
http://theinfluence.org/three-encounters-just-reminded-me-how-far-society-is-from-seeing-people-who-use-drugs-as-people/
iannee Carden Glenn

The head of the US public health service has called for an end to the "stigma" that makes drug and alcohol addicts less likely to seek treatment.
Surgeon General Vivek Murthy said addiction should be seen as a chronic illness, not a character flaw.
In a report on addiction in the US, he says about 21 million people abuse substances - more than have cancer.
Mr Murthy will remain in post for another two years after Donald Trump takes the presidency in January.
In the report, entitled Facing Addiction in America, Mr Murthy says: "For far too long, too many in our country have viewed addiction as a moral failing."

"This unfortunate stigma has created an added burden of shame that has made people with substance-use disorders less likely to come forward and seek help.
"We must help everyone see that addiction is not a character flaw - it is a chronic illness that we must approach with the same skill and compassion with which we approach heart disease, diabetes, and cancer."
Addiction in the US21 million
people have substance abuse disorders (abusing alcohol or drugs)
6.6%
of the entire US population

• 66 million people admit to binge-drinking in the last month
  
• 22.5 million people have used an illegal drug in the past year
  
• 12.5 million peopleadmit to abusing prescription medicine
  
• 78 people a day die of an opioid overdose
  

Facing Addiction in America report
On average, the report says, 78 Americans a day die of an opioid overdose - and about 12.5 million are addicted to prescription painkillers.
In an interview quoted by AP news agency, he said that a "key part" of keeping up progress on addiction services was to "make sure people have insurance coverage".

​To Continue-http://www.bbc.com/news/world-us-canada-38015122

​Analysis from ‘Hepatitis C: The State of Medicaid Access’ Reveals Some Improvement, But Discrimination Persists in Many States; Medicaid Directors Put on Notice to Confirm Restrictions & Any Plans to Comply with CMS Guidance
 
SAN FRANCISCO, CA & BOSTON, MA (Nov. 14, 2016) – The National Viral Hepatitis Roundtable (NVHR) and the Center for Health Law and Policy Innovation of Harvard Law School (CHLPI) today announced the preliminary findings of Hepatitis C: The State of Medicaid Access – a comprehensive assessment of state Medicaid programs’ discriminatory restrictions on curative treatments for hepatitis C, the nation’s deadliest blood-borne disease. The full report, with accompanying rankings and state-by-state report cards, will be released in early 2017.
 
Preliminary analysis from Hepatitis C: The State of Medicaid Access – announced today at The Liver Meeting® in Boston – shows some improvements in both state Medicaid program transparency and access since 2014, yet also demonstrates that most states continue to impose discriminatory restrictions which contradict guidance from the Centers for Medicare & Medicaid Services (CMS), as well as guidance from AASLD and the Infectious Disease Society of America.  Also concerning is that nearly half of states may not be making all restrictions publicly available. To read the preliminary findings in full, visit http://www.chlpi.org/stateofhepc.
 
The Hepatitis C: The State of Medicaid Access final report will grade and rank each state, as well as the District of Columbia, according to overall “state of access,” as determined by curative treatment restrictions related to three areas: 1) liver disease progression (fibrosis) requirements, 2) sobriety requirements, and 3) provider limitations. The report will also provide the first-ever national assessment of Medicaid Managed Care Organization (MCO) coverage of curative HCV treatments.
 
“With this announcement, we are officially putting state Medicaid programs on notice,” said Ryan Clary, executive director of NVHR. “State Medicaid directors need to make all treatment criteria publicly available and detail any plans to comply with CMS guidance, which clearly states that coverage policies cannot block hepatitis C patients’ access to effective, clinically appropriate and medically necessary treatments. It is unacceptable to have discriminatory restrictions that conflict with the CMS guidance or with established hepatitis C treatment standards. Our final report will grade and rank each state’s access criteria, and states that continue to discriminate will be called out.”
 
Robert Greenwald, clinical professor of Law at Harvard Law School and the faculty director of CHLPI, commented, “There is some good news and some bad news here.  In comparing our current findings to a 2014  hepatitis C treatment access report I published with a team of researchers in the Annals of Internal Medicine, we find that many states have reduced discriminatory practices.  Disappointingly, we also find that restrictions persist in many states, despite our hope that with established treatment guidelines, clear guidance from CMS, and successful litigation, we would see far more progress in eliminating discriminatory hepatitis C treatment restrictions.”
Greenwald continued, “While I think there is a general consensus emerging that discriminatory hepatitis C treatment restrictions will eventually be removed, voluntarily or by courts, we must hold state Medicaid programs accountable now, as some states still see a budgetary incentive in dragging their feet as long as possible.”

Key preliminary findings of the Hepatitis C: The State of Medicaid Access project include:

• Transparency surrounding state Medicaid program hepatitis C treatment access restrictions has increased overall since 2014;

• Access to hepatitis C treatment has improved since 2014 – primarily in the reduction/elimination of liver disease or fibrosis restrictions, while access restrictions related to sobriety and prescriber limitations have decreased to a far lesser extent; and

• While there are some MCOs with low levels of restrictions, many follow their states’ fee-for-service (FFS) Medicaid restrictions, while others impose more onerous restrictions in violation of federal law.

 
NVHR and CHLPI are asking state Medicaid directors to confirm all current treatment restrictions for curative hepatitis C treatments, and to detail any plans to broaden access and comply with CMS guidance. Medicaid officials may contact Ryan Clary (rclary@nvhr.org) and Robert Greenwald (rgreenwa@law.harvard.edu).
 
States for which fibrosis, sobriety, and/or provider requirements remain unknown include: Alabama, Alaska, Arkansas, California, Delaware, Georgia, Indiana, Kentucky, Maine, Michigan, Mississippi, Missouri, Nebraska, Nevada, New Hampshire, New Mexico, North Carolina, South Carolina, Tennessee Utah, Washington, and Wyoming.
 
According to the Centers for Disease Control and Prevention, hepatitis C affects approximately 3.5 million Americans. For the past several decades, hepatitis C treatment regimens revolved around painful interferon injections, which are vastly ineffective at managing the disease on an individual level and the epidemic on a public health level. In contrast, the new generation of treatments offer cure rates of near 100 percent with minimal side effects, providing hepatitis C patients with an unprecedented chance to live virus-free – and avoid liver failure, cancer-causing cirrhosis, liver transplants, and other health complications.
 
About the National Viral Hepatitis Roundtable (NVHR)
The National Viral Hepatitis Roundtable is a broad coalition working to fight, and ultimately end, the hepatitis B and hepatitis C epidemics. We seek an aggressive response from policymakers, public health officials, medical and health care providers, the media, and the general public through our advocacy, education, and technical assistance. NVHR believes an end to the hepatitis B and C epidemics is within our reach and can be achieved through addressing stigma and health disparities, removing barriers to prevention, care and treatment, and ensuring respect and compassion for all affected communities. For more information, visit www.nvhr.org.
 
About the Center for Health Law and Policy Innovation of Harvard Law School (CHLPI)
The Center for Health Law and Policy Innovation of Harvard Law School (CHLPI) advocates for legal, regulatory, and policy reforms to improve the health of underserved populations, with a focus on the needs of low-income people living with chronic illnesses. CHLPI works to expand access to high-quality healthcare; to reduce health disparities; and to promote more equitable and effective healthcare systems. CHLPI is a clinical teaching program of Harvard Law School and mentors students to become skilled, innovative, and thoughtful practitioners as well as leaders in health and public health law and policy. For more information, visit http://www.chlpi.org.

November 12, 20166:30 AM ETMICHELLE ANDREWS

The Vietnam War ended more than 40 years ago, but it continues to claim military lives. Nearly every spring new names are etched into the black granite walls of the Vietnam Veterans Memorial in Washington, D.C., which pays tribute to the more than 58,000 service members who lost their lives.
Jim McGough is one of them. As a 19-year-old infantry soldier in 1971, Army Specialist McGough was with members of his unit near the Laotian border when came under fire. A grenade exploded nearby, tearing apart his feet and lower legs. McGough was taken by medevac to Okinawa, where he underwent surgery, including a transfusion to replace the blood he had lost. Unable to wear army boots after the injury, he was shipped back to the United States, where he married his high school sweetheart, Sheryl Isaacson. They settled down near their hometown of Fort Dodge, Iowa.
Twenty years passed before McGough, who worked in magazine advertising sales, learned that he had hepatitis C, a bloodborne viral infection that attacks the liver and can cause scarring, called cirrhosis, as well as liver cancer. The virus only was discovered in 1989, and routine testing of the blood supply began shortly afterward. It was about that time that McGough, a regular blood donor, learned he had been infected. He'd never used intravenous drug or gotten tattoos — common routes of infection — so the McGoughs figured Jim must have contracted the virus when he had the blood transfusion in Japan.
Veterans are more than twice as likely to have hepatitis C as members of the general population, studies have found. The virus is significantly more common among Vietnam era veterans than those of any other service era.
McGough went to a liver specialist, who found no damage. The standard treatment at the time, a combination of the drugs interferon and ribavirin, had debilitating side effects. So Jim and Sheryl decided not to do anything about his infection.
"We were having a great time," says Sheryl, now 62. "We're going, 'No big deal.' When you're young, you're invincible."
But in his late 40s, Jim started to show signs of liver damage. About that time, he and Sheryl took a trip to the nation's capital, and visited the Vietnam Veterans Memorial. He thought it was magnificent, Sheryl remembers, and told her, "If this thing kills me, I want to get my name added."

McGough on a visit to the Vietnam Veterans Memorial, in Washington, D.C., when he was in his late 40s. McGough died in 2014 of liver cancer that doctors traced to a hepatitis C infection he'd contracted from a blood transfusion during his military service in the Vietnam War.

In January 2014, the virus did kill him. Jim had gone through the interferon treatment by then, but couldn't shake the disease. He finally succumbed to liver cancer.

To Continue story: http://www.npr.org/sections/health-shots/2016/11/12/501172064/name-of-a-vietnam-veteran-killed-by-hepatitis-c-added-to-the-wall