Sunday, November 30, 2014

Let's Reconsider HIPAA!

Lawmakers Urged to Ease 

HIPAA Limits for Parents

It is a tragic, terrifying, heart- and gut-wrenching experience for a parent to watch helplessly as the child they've raised from infancy spirals out of control as a young adult, caught in the whirlpool of drug or alcohol addiction or mental illness.

It's an even greater tragedy to bury that adult child, knowing that healthcare information that might have enabled a parent to intervene had been kept from them due to provider interpretations of the chief federal healthcare privacy law.

At a hearing Friday before a House subcommittee, members of Congress heard testimony from three families on whether that law, the Health Insurance Portability and Accountability Act, was harming the people it was created to protect.

One of the parents was Gregg Wolfe, owner of a court reporting and litigation support company in Pennsylvania, who told how his 21-year-old son, Justin, a college student, died of a heroin overdose in December.

“Though doctors knew since May 2011, no one in our family was aware that Justin was using heroin,” according to Wolfe's testimony (PDF) before the subcommittee on investigations and oversight of the House Energy and Commerce Committee. Wolfe said HIPAA was “valuable,” but added there was a “dire need to change the HIPAA law regarding minors and legally emancipated adults who either have a mental disorder, disability or drug and/or alcohol addiction.”

Since the Patient Protection and Affordable Care Act allows parents to retain health insurance coverage for their children until age 26, Wolfe asked that “an exception be added to HIPAA.” Wolfe would give parents access to their adult offspring's medical records if the child has a mental disorder or addiction and maintains legal residence in their parents' homes or lives under the auspices of their parents' care and insurance coverage.

Also testifying, Leon Rodriguez, head of the Office for Civil Rights at HHS (PDF), the chief HIPAA enforcement agency, said that unless the patient objects, healthcare information may be disclosed to parents if the patient is “not present or is incapacitated.” If the patient objects, the rule “respects an individual's wishes to the extent practical and appropriate. (According to Wolfe, his son took pains to hide his addiction from his parents.)

“The ability to assure individuals that their personal health information will remain private is particularly critical in the area of mental health care, where concerns around the negative attitudes associated with mental illnesses may affect individuals' willingness to seek needed treatment,” Rodriguez said.

But Rodriguez also said the law authorizes providers “to alert appropriate persons” if a patient “poses a serious an imminent threat to himself or herself, or to another person,” including a parent or another person “who are reasonably able to prevent the serious and imminent threat,” provided the disclosure is “consistent with applicable law and standards of ethical conduct.”

Providers still need “lots more guidance,” in clear language and “in places where people can find it” about what's allowable under HIPAA, said witness Deven McGraw, a lawyer who heads the Health Privacy Project at the Center for Democracy and Technology, a Washington think tank.

Follow Joseph Conn on Twitter: @MHJConn

Thursday, November 20, 2014

Nearly 25,000 Maryland H.S. Students Have Used Opiates, Including Heroin

Below is the link to the data analysis for the Youth Risk Behaviorial Survey administered to a sampling of middle and high school students in spring 2013.  

Here is some data that may or may not surprise you:

22, 673 Maryland students, 15 or younger, used heroin one or more times during their life.  24, 968 Maryland students, 16 or 17, have used heroin. 

22,808 Maryland students, 15 or younger, have taken a prescription drug (such as OxyContin, Percocet, Vicodin, codeine, Adderall, Ritalin, or Xanax) without a doctor's prescription one or more times during their life.  25, 142 Maryland students, 16 or 17, have as well. 

22,755 Maryland students, 15 or younger, took a prescription drug without a doctor's prescription one or more times during the past 30 days.  25,112 Maryland students, 16 or 17 have as well. 

22,442 Maryland students, 15 or younger, have used a needle to inject an illegal drug into their body one or more times during their life.  24,809 students, 16 or 17, have also done so. 

22,458 Maryland students, 15 or younger, were offered, sold, or given an illegal drug by someone on school property during the past 12 months.  24, 814 Maryland students, 16 or 17, had the same experience. 

Monday, November 17, 2014

On Enabling

It's Lonely at the Bottom

It's easy to throw around terms like "tough love," "enabler," and "rock bottom." Living with those terms is another story.
In an effort to find an answer that leads to treatment for an addict there seems to be a lot of discussion about the tough love approach. Some of those stories include those families who have lost a child to overdose after following the tough love recommendation of a therapist—meaning they estranged themselves until the child reached “rock bottom” and was ready for treatment.

Some move to new homes, towns or even states in an effort to restart their lives, free from the turmoil of a family dealing with addiction. Eventually, for some, their loved one does hit the rockiest of bottoms—they overdose and die alone. I also know parents who followed the tough love advice with success, and recommend it as the only way to help their child and keep their sanity.

Twenty years ago I sat with my son’s therapist to discuss his substance abuse and relapse issues. She couldn’t tell me what my son’s drug of choice was, leaving me to come to my own conclusions which, in retrospect, were a bit naïve. I leaned across her mahogany desk where the timer was ticking away the minutes allotted for my session, looked up at her and asked, “What can I do?”

That was the first time I heard of the concept of tough love. She told me that when he hit rock bottom, he would be ready for a meaningful, long lasting treatment and recovery.

Rock bottom? I wondered what the heck she meant by rock bottom? She explained to me that rock bottom is the hoped for result of tough love—when you love your child enough to remove him from your home, no longer provide him with food or clothing, and basically disassociate yourself from his life until he becomes distraught enough to ask for help—or is jailed or near death. The therapist assured me that he would eventually come begging for my help, and then his recovery could begin.

She told me I had to stop enabling my son and practice tough love.

When he hits rock bottom then it is okay for me to provide him with food and clothing? When he hits rock bottom I can give myself permission to help him? I was confused and I was angry about what she was suggesting. While she talked, my mind wandered back in time to that tiny newborn child who clutched my finger with his little hand like he would never let go because he trusted me to be there for him when he was good, when he misbehaved and yes – when he fell into a place where only a mother’s love lives. And now this woman was telling me to abandon my child – to give up? To turn my back on my first born son? I thought “rock bottom” okay, I get it.

When my son was in the 8th grade he was depantsed in the boy’s locker room while the gym teacher looked on laughing, explaining later that boys will be boys. An hour later the principal called me to tell me they couldn’t find my son at school. I immediately drove to the school and my son was nowhere to be found. The rural school was about five miles from our home and it was raining. I drove slowly along the road looking for my son back and forth twice. Finally I saw what looked like some clothing in the ditch along the road. I stopped my car, got out and found him there soaked, laying in the mud, humiliated and sobbing. Rock bottom, Okay I think I’ve got it now - that was an example.

When my son was in the 12th grade he called me at work to tell me that he loved me and that he didn’t want to live anymore. He felt that God had deserted him and that neither God nor I could protect him from our volatile home situation. He had taken two bottles of pills. After a trip to the ER his stomach was pumped and he was admitted to the adolescent suicide psychiatric unit where he stayed for several months. Okay, I get it - I think he had reached rock bottom.

NO, I said to myself as I was driving back home alone after meeting with this tough love-loving therapist—I will NOT make a conscious decision to sit by and watch my son hit rock bottom before I offer him help. I will love him unconditionally until he feels like he is worth saving. I will love him when he steals from my bank account and hold him in my arms as he apologizes. I will replace the money he took from his brother’s birthday cards and hold his hand as he tells me how ashamed he is. I will sit and rock him as he sobs in my arms after another ruined family outing or holiday. We will sit at length and discuss behavior issues, anger issues, life issues and his self-loathing trying to make sense of it all. I will cry with him as he grieves a failed marriage. I will watch him suffer as he fights with his addiction and when he detoxes. I will cover him with blankets when he shakes uncontrollably and use cold packs to keep his fever down. I will spoon feed him vegetable broth when he can’t keep solid food down. I will buy emergency one way plane tickets. I will do it because I love him unconditionally. I don’t love him any more or less because he made a bad decision in the moment that changed his life forever. I will do it because he is worth saving.

My thoughts wandered back to my own experience with tough love when I was 19 and I remembered an argument with my mother and the ultimatum she gave me as I walked out the door. She said, “If you leave now, when you come back your clothes will be on the front porch.” Right! - I thought as I drove my car out of the driveway. But when I returned the doors were locked and all of my personal belongings were in boxes on the porch. Now that was tough love. The reason for the argument isn’t important here. My mother and I reconciled, and even sometimes laughed about my defiance. I never moved back home. But I will always remember the feelings on that night of hopelessness and feeling abandoned and unloved, not to mention homeless and alone.

So, yes, I was an enabler. I met my son every day where he was at in his life without judgment. I enabled my son to live at home as long as he wanted to. When he moved away I sent him tickets to come home when he needed to. When he called crying because he had relapsed and was embarrassed, I told him to never be ashamed of who he was.

And then when he hit rock bottom for the last time, I signed the papers to bring his body back home. I picked out clothing and made funeral arrangements and I designed a headstone for his grave—just like the mom who practiced tough love. So which is right? Who knows! Even the experts don’t agree.

I believe it is a combination of making a decision based on the availability of support, your own tolerance level, having tried everything that seems logical, being at a loss about what to do next and finding yourself willing to try anything.

I like this quote from The Water Giver—“Motherhood is about raising and celebrating the child you have, not the child you thought you’d have. . .and, if you are lucky, he might be the teacher who turns you into the person you’re supposed to be.”

Diannee Carden Glenn is based in North Carolina and Florida and has been campaigning for the last year for overdose prevention. She last wrote about the death of her son from a heroin overdose.

Sunday, November 9, 2014

Secretary Sharfstein's "Major Educational Campaign" is a Deliberate and Bogus Deception


According to a report on WFMD Radio, "Drug and alcohol overdose deaths are on the increase in Maryland. The Department of Health and Mental Hygiene says so far in 2014, there have been 528 deaths from overdoses in the state, a 33% increase."  "Dr. Joshua Sharfstein, the Secretary of DHMH, says most of these deaths are due to heroin. The agency says there's been a 46% rise in heroin-related deaths, and seven-fold increase in fentanyl-related deaths."

"DHMH says it's working to get the message out on how to prevent overdose deaths. 'We have a major educational campaign where we're asking people to call 211 to get linked in to treatment to help people who are addicted to drugs. We're also providing education on what to do in case of an overdose, and we've trained thousands of people to use opiate overdose reversal drugs in order to save someone's life,' Dr. Sharfstein says."

Dr. Sharfstein:  Marylanders recently witnessed a "major educational campaign" when would-be legislators tried to get votes by swaying the hearts and minds of the state's voters through radio and television advertising.  Printing a stack of posters with useless and misleading information on them does NOT constitute a major educational campaign.  And we know YOU are smart enough to know that!  Can you really pat yourself on the back in front of the heartbroken Moms and Dads whose children may not make it through the night alive?  Do you have absolutely NO compassion, empathy, OR integrity?

Dr. Sharfstein:  Why would you ask "people to call 211" when those that call ARE NOT linked in to the treatment they need.  Random tests have been done by informed callers who have found that 211 operators DO NOT provide relevant or useful referrals.  Not only does this NOT "help people who are addicted to drugs", it wastes their valuable time and energy when they are in crisis.  It is a deplorable abomination that you would care so little and value human lives so little that you would waste state tax payer's dollars to devise a program that provided misinformation to people who are in crisis.  How can you boast about a program that DOES NOT WORK?!

Dr. Sharfstein:  Why would you be so bold as to pat yourself on the back for spending grant money that should have gone to train parents and family members --FIRST RESPONDERS, and instead went to train police and EMTs --emergency personnel who are called to the scene by those who are trying to keep the overdose victim alive until they get there.  Family members have had to get trained, find locations to hold trainings, and promote the trainings themselves in order to get life-saving Naloxone into the hands of other family members.

To blatantly mislead and misinform the public in the way you have done here is beyond cruel to the parents of kids who suffer with a very treatable mental health disorder --parents who have looked to DHMH for help and been ignored and rejected.

You add much salt to our wounds by stating publicly that you have helped us when you so clearly HAVE NOT!  

Thursday, November 6, 2014

Op-Ed: Anger a Necessity for Addiction Recovery Community

THE ANONYMOUS PEOPLE SCREENINGIn late September, more than 1,000 family members who have lost loved ones to drug overdoses rallied in Washington with an angry message: We’re Fed Up! with the epidemic of drug addiction in this country and the soaring number of overdose deaths.
Those family members have every right to be angry. They have every right to use their First Amendment rights to direct that anger toward the federal government and the current status quo.
I get it. I’m angry too; in fact, the Fed Up! rally made me angrier. It stood in stark contrast to the tenor and tone of the many other Recovery Month events I had the privilege to attend this past September.
It is apparently OK for those family members to angrily demand a better response from the federal government to the current health crisis. But when the addiction recovery community — more than 23 million Americans and their families — gathers to walk, speak and put a face on recovery there doesn’t seem to be much anger at the current state of affairs that is costing us more than 100 American lives every day.
Apparently, anger is a frightening emotion for many in the recovery community. Perhaps rightfully so when looking at it through individual personal recovery needs. Even the most famous recovery book in history, "Alcoholics Anonymous," named by the Library of Congress as one of the books that shaped America, suggests, “If we were to live, we had to be free of anger … [it] may be the dubious luxury for normal men, but for alcoholics these things are poison.”
But how else are we going to collectively move the needle on the current epidemic without using the prime emotion that has been at the forefront of all other advocacy movements in American history?
Floating balloons and celebrating that recovery is possible has been a great start in many communities. But when we look around at other marginalized health populations in history like the HIV/AIDs movement and the disability movement, they get a capital M on “Movement” in our cultural reflections onlybecause they got angry.
Is it not OK to express outrage over the blatant discrimination against many of us when we try to access health services, buy insurance, apply for a job or complete a housing rental application?
There’s a distinct difference between interpersonal fear-driven anger (that “The Big Book of Alcoholics Anonymous” warns against), and anger related to advocacy on behalf of your community using your citizenship. That kind of anger is actually the opposite of fear, because it takes great courage for marginalized individuals to organize and fight for their individual and collective civil and human rights.
People in recovery must get angry. We must take some lessons from the families who are fed up and join them in this emotion. For those of us who can take a stand, we owe it to those who cannot to channel this emotion into action.
As Stacia Murphy says in my documentary “The Anonymous People” about Marty Mann’s driving force (the first woman to ever achieve long-term recovery in Alcoholics Anonymous who chose to use her personal story publicly for social change), “Advocacy is about anger.” Our stories do have power!
Anger is the single missing component that will gel the entire addiction advocacy movement together. When recovery advocates embrace anger as its ally, we’ll create an overpowering force against public shame, stigmatization and discrimination.
Talking about mobilizing a constituency of consequence during the civil rights movement, Martin Luther King Jr. said, “We did not hesitate to call our movement an army. But it was a special army, with no supplies but its sincerity, no uniform but its determination, no arsenal except its faith, no currency but its conscience.”
Fifty years from now, will people look upon this new emergence of public recovery advocates with a capital “M” in their mind?  Time will tell.
Greg Williams, a person in long-term recovery for more than 12 years from addiction to alcohol and other drugs, is the filmmaker of the award-winning documentary "The Anonymous People." Williams received his master’s in addiction public policy and documentary film from New York University. 

Monday, November 3, 2014

Political Propaganda: ONDCP Praises MD's Efforts on Overdose

Below is a press release from Maryland's Department of Health & Mental Hygiene. Looks to me like the incumbents had to call in a favor from their friends at the White House in light of Larry Hogan's proactive promise to call a state of emergency as a result of the opiate epidemic's rising death toll.  
Mr. Botticelli did you intentionally join the Governor in his attempt to pull the wool over the eyes of the Maryland public or did he have you fooled, too? 
First of all, Mr. Botticelli, how could you assume that "Maryland is assigning the highest priority to addressing the overdose epidemic", when the Governor cut the treatment budget by 6.4 million dollars not even a year ago.  
Second, for Mr. O'Malley to make a thing a "goal" but take no action toward accomplishing that goal, is called "political spin" to policy makers, and... well.... "a bunch of bull" to many down home Marylanders.
Third, access to Naloxone does not "help people enter treatment."  In fact, after an overdose, the state does absolutely nothing to ensure that anyone gets into treatment.  There are no bed-to-bed transfers --or even referrals. After an overdose, the individual is simply sent back to their same environment without treatment or any intervention at all for that matter --still addicted.  
Fourth, Marylanders are wondering exactly what "broad set of strategies to address this crisis" you are referring to Mr. Sharfstein?  --And why on earth you waited so long (right before the election) to announce them, when our kids have been dying for the past four years --as we have told you repeatedly.  
Fifth, while Marylanders are very happy that "In March 2014, DHMH launched the Overdose Response Program," we are more than a little disappointed that it took volunteer parents a lot of unpaid time off work to find a legislator to force you to adopt that program via legislation.  We would find it a lot more palatable when you pat yourself on the back for something that your constituents forced upon you, if you and your staff were more inviting to your statewide network of family peer support advocates.  That way, we could initiate policy to save our own children's lives without always having to go through the legislature.   
Sixth, The reason why families spent their time initiating this bill was so families --THE REAL FIRST RESPONDERS, would have access to Naloxone. However, you gave grants to counties to pay EMT's and police officers to be equipped with Naloxone --while us family members STILL do not have the Naloxone that WE lobbied for and who provisions were made for in the Overdose Prevention "Naloxone" Bill.
Seventh, the state's "public information campaign" consists of some posters and a FaceBook page. Perhaps you should hire Anthony Brown's public information campaign Manager.  I am quite sure that he will tell you, Mr. O'Malley, that television is the way to go --albeit, more expensive.  But, if you guys can raise those kinds of funds to get re-elected, surely you can raise those kinds of funds to save the youth of your state --to save so many mothers the heartbreak of having to bury a child?  
At any rate, the families who care about your message ARE NOT BUYING IT --and the families who don't care ARE NOT READING IT.  So how about saving the political rhetoric for your cocktail parties, Mr. O'Malley.  We mothers of children with a substance use disorder DO NOT DESERVE IT!  
Lisa Lowe, Heroin Action Coalition                                                       

White House’s Office of National Drug Control Policy
Praises Maryland Efforts on Overdose
DHMH Expands Access to Reversal Drug
 Baltimore, MD (October 29, 2014) – The White House Office charged with leading the country’s fight to reduce drug use is praising the efforts of the Department of Health and Mental Hygiene (DHMH) to combat substance use and its consequences in Maryland. 
Michael Botticelli, the acting director of the U.S. Office of National Drug Control Policy (ONDCP), met with DHMH officials last week and reviewed the department’s strategies to combat substance abuse and overdose deaths in Maryland. In a Oct. 27, 2014, letter addressed to DHMH Secretary Joshua M. Sharfstein, Botticelli writes: “Maryland is assigning the highest priority to addressing the overdose epidemic affecting many states in our nation. There is much many other states can learn from your efforts.” 
“Overdose deaths are an epidemic affecting states across the country,” Gov. O’Malley said. “Combating this scourge and reducing overdose deaths by 20% by the end of 2015 is one of the 16 strategic goals of the O’Malley-Brown Administration.”  
This letter of support comes as DHMH announces the expansion of access to life-saving medication naloxone to Medicaid enrollees. Naxolone is used to reverse the effects of an overdose from opioid drugs like heroin. As a result of the change to the Medicaid pharmacy benefit, doctors can write prescriptions for the medication to enrollees without preauthorization. DHMH is reaching out to prescribing physicians and drug treatment programs with guidance on how to prescribe. 
“Greater access to naloxone will lead to more opportunities to save lives and help people enter treatment,” said Sharfstein. “We appreciate the support of ONDCP as we pursue a broad set of strategies to address this crisis.” 
Expanding naloxone access to Medicaid enrollees builds upon Maryland’s efforts to expand the overdose remedy statewide. In March 2014, DHMH launched the Overdose Response Program, which authorizes local entities to train and certify qualified individuals to recognize and respond to an opioid overdose by administering naloxone. DHMH has trained more than 3,200 individuals through this program. 
The State Police have committed to having all road patrol troopers trained and equipped with naloxone. The State requires every Emergency Medical Technician across the state to be trained in the administration of intranasal naloxone and every Public Safety transport unit to carry naloxone. It also builds upon the state’s public information campaign, “Be a Hero,” which emphasizes the importance of substance use treatment and provides facts about reversing a drug overdose. 

In June, Governor O'Malley issued an executive order establishing a statewide task force and initiating a broad range of efforts against overdose. Click here for more information on Maryland’s efforts on Overdose Prevention.