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March 27, 2012: At the Supreme Court

On Tuesday March 27 I entered a time machine.  The biting cold of a March day hung over the Supreme Court as it cast a cold gray shadow over the early morning events, events that delivered me back to August 11, 2009.  

This was the day my then senator, Arlen Spector, hosted the first of the infamous “town hall” meetings in Lebanon, PA.    That day, almost 3 years ago, I went to hear my senator speak about what I thought would be “wonky” healthcare policy about an issue that I held near and dear to my heart.  I craved to hear and thoughtfully discuss solutions to an issue I constantly struggled to wrap my head around because there are so many complexities lying behind it.  As I went to engage in what I thought would be a serious policy discussion, I found anything but that.

That August morning I wasn’t able to get anywhere near the building that held the meeting and I never got in.  Instead, I spent the time in the streets with thousands of screaming protesters making rhetorical and shallow claims about broad ideology:  socialism, big government and the like.  The sound was deafening.  As I stood in the streets, the chaos permeated into every pore of my being and settled into my core leaving  me with a pit that hung heavy inside me for the next 2 ½ years.    I was disheartened, confused and scared.

While I continued to grapple with the complexities of this issue, I knew that it lay at the heart of a complex sociological picture of a changing global economy, a decreasing middle class and exponentially rising costs of healthcare.  These ideas I simply could not put it into a 4 word protest sign.  It required deep and thoughtful analysis.  I grew scared that this noise and politics was overshadowing a real and serious dialogue.  The 2 ½ years that followed that day I dug deeper to study this issue and engaged in personal self-reflection as a stroke survivor.  Out of that, “Health on the Horizon” was born.

This Tuesday March 27 I stood in the chilling shadow that the Court cast over the crowd.  The cold penetrated my thick wool coat and sent me into a shiver, as did the shouting that resonated from the crowd.  As the opposing sides fought to overshadow and out-scream each other, the decibel wars of the speaker systems began.  While one group spoke over a speaker, the other raced to turn up their volume and shout louder.  Under this shadow of noise, paraded an array of people dressed in an assortment of characters:  The Statue of Liberty, Ben Franklin, George Washington and even Mickey Mouse (or at least his hands).   I was disappointed in this scene, but also in myself.  I was participating in the very thing I was striving to move beyond.  I regretted my trip to DC.  

Under the aura of regret, I made my way to the perimeter of the crowd.   I found my own space at the edge of the Court steps.  I turned around and put my back to the shouting crowd and stared at the awesome pillars that supported the high court.  Staring at this great building I was filled with a presence, a power that was greater than me and I was absorbed by its mightiness.  Radiating from the marble walls I could hear the voices and struggles of generations past that had also come to this place to find their answers.  They sought answers to questions that challenged the era in which they lived, a process that has withstood the test of time.  They had faith in it and now it was our turn.

A sense of peace overcame me and the noise that echoed through my head began to disintegrate.  As I turned back around to find my own way to engage in democracy, an amazing thing began to happen.  Two of the main organizers for the opposing sides had come to an agreement to take turns with the microphone, whereas each would have their individual opportunities to have their voices heard without interruption.  It worked.

As I listened to often sad, but real stories of people and their challenges with healthcare, the group began to discuss specific provisions in the law.  After that, I found my place at the periphery of the crowd with the sign I had created about Pennsylvanians and details of the law.  I waited for people to approach me.  For over 6 hours people read my sign, asked questions and we discussed detailed pieces of the legislation.

Not everyone I spoke with supported the law and some were skeptical.  As the late afternoon began to set in, I engaged in a conversation with a physician.  He was not a supporter of the law but as I spoke with him I found our only option was to seek common ground.  We agreed on the Medical Loss Ratio, Rate Review and the things that are driving up healthcare costs.  Where we didn’t agree with each other was on the lifetime cap provision and the sustainable funding of the law.  He did not believe the CBO report to be accurate and he also believed the law would weigh heavy costs on his practice.  He also felt the lifetime caps would disrupt the business model and cause insurance companies to go bankrupt.

While the CBO states that the new healthcare law is fully financed through a combination in savings from medicare and medicaid, taxes and fees, it also projects a reduction in the deficit.  He refused to believe this.  For me, a business model of allowing people to die or slip into poverty trying to treat illness is simply unacceptable in the wealthiest nation in the world. 

However, as I watched him speak, the intensity of his voice, his veracious tone and the sharp gestures created in his body language sent me another message.  I have seen this message in many people I have met for this project.  It was the message of anxiety and uncertainty.  Maybe everyone expresses it in their own unique way.  I was beginning to understand this and this anxiety needs to be acknowledged.

As the late afternoon sun now illuminated the awesome pillars of the Court, I graciously shook the physician’s hand and thanked him for the thoughtful dialogue.  I panned over a new crowd that was beginning to descend upon the area.  Ben Franklin and The Statue of Liberty had returned. 

Click HERE for Video of my statement to CCTV

Click HERE for my statements to The Guardian Newspaper

Click HERE for photos and overview from Democracy in Action

With Theresa Brown Gold 

The crowd

My sign

Supreme Spirit

Today we recognize the Second Anniversary of the day congress passed The Patient Protection and Affordable Care Act, 2010.  As the law goes before the Supreme Court this week, it seemed fitting to revisit Theresa BrownGold as she is currently spending her days at the Supreme Court.  I will be joining her this week.  Please follow me on Facebook.

Theresa BrownGold with Courtney:  January 2012 US Supreme Court

As the unforgiving bite of the winter winds whip through the mall in Washington DC this year, they eventually make their way around the US Capitol.  Behind the Capitol, their relentless bitterness ultimately encircles the majestic pillars of the Supreme Court.  Positioned between these two forces of authority stands Theresa BrownGold and Courtney.  Theresa, a gray-haired 57 year old woman from Bucks county, carries herself with a sense of purpose.  Courtney however, is held in the nurturing embrace of Theresa in the form of a painting, representing a soul that our healthcare system left behind.  

Courtney

Courtney was a Type I diabetic woman in her 20’s.  She attended college on a full scholarship in track and field.  Upon graduation, like many young people out of school, she was uninsured.  In order to save money, she cut back on her nighttime insulin medication.  In 2010, she slipped into a diabetic coma and died.

My healthcare journey around Pennsylvania this year led me to Theresa last fall where she did a guest blog for “Health on the Horizon”.  Theresa is a portrait artist that began a project called “Art As Social Inquiry” over 3 years ago. In this project, she documents the plight of the uninsured/underinsured though the use of portrait art.  Recently, in light of the upcoming Supreme Court decision about the constitutionality of the PPACA, Theresa has taken her project to a new level.  Each day the Supreme Court is in session this winter (6 days a month), you will find Theresa outside on the steps with one of the many subjects she has painted over the years.  Additionally she spends 4 days a month in front of the Capitol for a total of 50-55 hours a month in DC.  Each day she is in DC she has updated her followers on her Facebook page with the events of the day.

On this day in late January, the winter wind was particularly unforgiving.  As the winds whipped through the Romanesque pillars of power, Theresa fought to keep Courtney stable.  As the southern winds pushed, they gave way to the tug of the northern gusts--A dance that went on for hours.  Theresa held on tight and Courtney never budged.  

Later that day, Theresa posted her experience fighting the power of the wind on her Facebook page and concluded that it was with Courtney’s help that the painting stood strong in the forceful powers of wind and the channels created by the mighty buildings.  In response to Theresa’s post I commented with words of encouragement to keep up the fight for Courtney and all those like her.  I logged out and went about the day to day activities of my life.  

A few days later I revisited Theresa’s pursuit in order to find out the latest news.  I returned to the story of Courtney and Theresa’s battle with the wind and found someone had given my comment a “Like”, the 21st century version of fellowship and camaraderie.  It was from Courtney’s mother.

I was humbled. Just as Courtney’s sturdy hand reached out to Theresa that windy afternoon, through her mother, Courtney was reminding me that this issue lies at the very soul of the human condition.  Regardless of the powerful force of human or nature, the spirt of those who have slipped into the cracks of a broken system refuse to be silenced.  Theresa and Courtney are making sure that they aren’t.

Today's Anniversary Post is done in memory of Courtney Leigh Huber

Courtney Leigh Huber died on January 5, 2010 because she wasn't able to access health care to take her prescription diabetes medication.  In her honor, her family and friends have created "Courtney's Keepers", an organization dedicated to providing diabetes supplies to those in need.  


On September 23, 2010, 8 months and 18 days after Courtney passed away, the provision in The Patient Protection and Affordable Care Act became effective that states that all young people under the age of 26 are eligible to stay on their parent's health insurance.

In the Fall of 2011, I was honored to be a part of Theresa’s collection (see My Story).  Theresa and I have called ourselves “kindred spirits”, each telling this story in our own way.  I am often reminded of a conversation that we had last fall when she said, “With each stroke we need to keep telling this story.  Mine is with the paintbrush, yours is with the keyboard”.  And so the story goes on........

Domestic Violence Screening in the PPACA

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Join "Health on the Horizon" in recognizing the Second Anniversary of The Patient Protection and Affordable Care Act at my speaking engagement on April 3, 2012.  Sign up today!

Screening for Domestic Violence is a provision in the PPACA

A doctor’s examination room is often perceived as simply a sterile and routine place to most of us.  However, to a woman who is a victim of domestic abuse, it can be a sanctuary, a refuge and escape from the confining trap of shame that she has often endured for decades.  Emotional and physical trauma eats away at the soul of its victims and they often do not know where to turn.

Since the early 1990’s the Pennsylvania Coalition Against Domestic Violence (PCADV) has been a trailblazer in the field of screening for domestic violence in the health care setting through its Medical Advocacy Project.  The basic components of this project include training medical staff on how to accurately and effectively screen, counsel and refer victims to domestic violence programs.  This project has found that when a woman is routinely screened by a trained professional within the confidential doctor/patient privilege, she is more likely to disclose and therefore receive help.  

This is a vital service for an often overlooked public health issue.  Traumatic Brain Injury (TBI) from physical abuse is a common injury among domestic abuse victims leaving them with lifelong physical, cognitive and emotional challenges.  Research has shown that 90% of all injuries related to domestic abuse involve the head, neck and face (Monohan and O'Leary 1999). 

As of August 1, 2012, the Patient Protection and Affordable Care Act will require that all insurance plans cover screening and counseling for domestic abuse, a provision found under preventive services for women’s health.  According to Nicole Lindemyer, Policy and Special Project Manager at PCADV, when a victim who is at a high risk of being killed receives intervention services, she has a 60-70% reduction in risk of being re-assaulted and killed.  Therefore, this early intervention is critical to curtailing the incidence of TBI and often preventing homicide.

In 2014, more people will have access to healthcare because of the PPACA, and hence more victims will be screened for domestic violence and connected to these life-saving services.  Ms. Lindemyer is expecting a greater request for trainings for practitioners because they will now be reimbursed for this service.  She finds the provision in the PPACA as a validation of what they have known for decades: that in order to curtail domestic violence, you need to meet women “where they are at”.  Ms. Lindemyer proclaims that this provision in the PPACA is a “victory for women” in that “It’s a paradigm shift from seeing domestic violence a simply a criminal justice issue and now recognizing it for what it is: a public health issue.” 

Nicole Lindemyer is the Public Policy and Special Projects Manager for the Pennsylvania Coalition Against Domestic Violence, Pennsylvania’s statewide network of domestic violence programs.  In this role, she leads the development and implementation of the Coalition’s legislative and public policy agenda—analyzing and drafting legislation, lobbying and testifying before the legislature, and encouraging civic engagement in the political process.

Prior to her current role, Nicole was a civil rights litigator in Minneapolis and Chicago in the areas of housing and employment discrimination and in poverty law, specializing in violence against women issues within these contexts.  She was an Equal Justice Fellow from 2001 to 2003, and has written and lectured extensively on violence against women in housing.  A survivor herself, Nicole is a zealous advocate for women’s rights, particularly the right to be free of physical and sexual violence.

Robert's Story

It was a love affair that lasted over 25 years.  Robert’s first love was heroin.  The only problem was, typical of a destructive relationships, she didn’t love him back.  The deceptive nature of her seduction could lure, entice and ensnare.  Under her skillful spell she could work her magic with her crafty hands.  She could deliver anyone that followed her down a road to euphoria.  Then, without notice, she could plummet them into the pit of despair.  She was filled with empty promises.  

Since 1972, Robert did anything and everything he could to please his “love”, leading him into a life not unfamiliar to an addict.  The cycle of theft, drug dealing and jail became a common practice.  He became a skillful business man in his world.  Running his “boosting” practice earned him the reputation in the neighborhoods as the guy who could deliver the highest quality shoplifted retail goods.  Clothing, shoes, household items, personal hygiene products merited him the infamous name “Boscov’s Bob”.

As the years went on, Robert’s path became littered with broken relationships and a criminal record over 6 pages long.  Behind him he left two broken marriages and shattered relationships with his children.  Heroin was in control of everything.  

As darkness settled in on a night in the mid 1990’s, so did Robert and heroin’s relationship.  Heroin was a temperamental, unpredictable and infuriating lover.  She pulsated through his veins and his heart beat through his chest that night.  As he awoke from the overdose his eyes followed a pin-stripe up the pant leg to a burly police officer standing over him.  From the captivating clutches of heroin’s fuzzy haze, he could hear the words from the officer’s booming voice, “Just another junkie, let him die.”  

Between the years 1977-2000, Robert had spent time in over 7 Pennsylvania County jails and with each conviction, discharge and parole he learned to network and became a more skillful criminal.  The cycle of crime continued so that he could feed his lover’s unquenchable thirst.  Like most addicts, Robert thought this was normal.

In 1998, after being caught at his last shoplifting incident and facing a state sentence, he had enough.  Robert finally broke up with heroin.  Predictably, she didn’t take it lightly.  Within the confining chambers of a concrete jail cell, the wretched nature of drug withdrawal ran its course- vomiting, diarrhea, sweats and shakes.  Robert freed himself from the grasp of this evil temptress.

After serving out his 1 ½ year state sentence, Robert turned to the Lebanon Rescue Mission for a program for convicted criminals.  As a disabled veteran, he qualified for a full scholarship to work on a degree program at Alvernia College.  He majored in addiction and now works as an addiction counselor and community drug and alcohol educator.  Each day he helps others break free from the cycle of addiction.

Robert’s story is not an unusual one.  Drug addiction takes hold and destroys the lives of millions of people and their families.  However, the question we are left with is this: what do we do as a society to combat this issue that is ruining lives, families and filling our prison system?  Before we build more prisons in order to deal with common criminals like Robert, we need to step back and look at the facts.  According to a study done by the Center for Substance Abuse Treatment, it costs $25,900 a year to incarcerate one person, whereas, it costs $1,800 a year for outpatient drug treatment and $6,800 for long-term residential care.  Similar studies have shown that for every $1 dollar in drug treatment yields a $7 reduction in crime-related costs.  Furthermore, this ratio raises 1:12 when healthcare costs are included.  One year of drug treatment has been conclusive with a reduction in drug selling, illegal activity, sex trading, homelessness and an increase in employment.

When the Patient Protection and Affordable Care Act was passed in March 2010, part of the essential benefits included a provision for mental health and substance abuse treatment.  It is now part of the law that insurance companies include and pay for drug rehabilitation services similar to the ones that Robert now provides.

¹ for Substance Center Abuse Treatment, 1997 National Treatment Improvement Evaluation Study (NTIES) (Rockville, MD:  CSAT, 1997); Federal Bureau of Prisons.

² National Institute on Drug Abuse (NIDA)  Teaching Packet No. 3:  “Understanding Substance Abuse and Addiction:  What Science Says” http://www.nida.nih.gov/pubs/teaching/Teaching3/Teaching5.html

³ Office on National Drug Control Policy, “ONDCP Drug Facts February 2002” Presentation.

Guest Blogger: Barb Bloomfield

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Today is a guest Blogger:  Barb Bloomfield

Barb Bloomfield worked as a union organizer for hospital workers, and later as an a geologist involved in investigation and cleanup of contaminated groundwater.  Just before she retired, she got a bad case of arthritis in one of her knees.  While she was getting physical therapy, which was paid for by Medicare, she thought about all of the people who had to pay out of pocket or couldn’t afford treatment at all and decided to get involved in the campaign to make health care available to everyone.  Since her retirement, she has been volunteering with the Pennsylvania Health Access Network in the campaign for access to quality and affordable health care.  

A SMALL WINDOW INTO THE BRITISH NATIONAL HEALTH SERVICE

In August 2011, my partner Rich and I went to England.  We decided to go to Cornwall, the southwestern corner of the country, where, I am told, half of England spends its vacations.  We went because I love high cliffs with crashing ocean, I wanted to see a moor, and because Tintagel, the legendary birthplace of King Arthur, is there.  

 One day, we were having lunch at a cafe at Crackington Haven, a deep, horseshoe-shaped cove carved into the high cliffs by the local river and the ocean.  The beautiful beach was made of coarse sand and ocean-smoothed pebbles and cobbles.  We sat outside on the patio to enjoy the pleasant weather and dramatic view, but we and a young lady at another table were being attacked by yellow-jacket bees, so after trying to help each other swat them away, we went inside.

 Our new young friend was wearing a T-shirt that had something to do with health care, which I asked her about. She told us the most amazing story:

She was in the middle of a 630 mile solo walk around Cornwall's coastal path, which follows the edge of the land just as it drops to the ocean hundreds of feet below.  The Cornwall peninsula is a rugged plateau with steep narrow valleys carved by rivers on their way to the sea.

Shelly was walking to raise money to buy a physical therapy machine for a hospital - the Bristol Royal Infirmary -  where she had been treated for a congenital deformity in her legs - extreme knock-knees - and was facing a lifetime in a wheelchair.  She had had four surgeries, and then spent 20 hours a day in a machine which continuously moved her legs to strengthen her muscles.  Now she could walk like any healthy young person does without even thinking.  What a wonderful way to celebrate her full recovery, and what a story!

But, I asked who had paid for her surgery?  The British National Health Service had paid for everything.  Then why did she have to raise money?   She said she was grateful for the medical care that had enabled her to live a normal life and decided a good way to "give back" would be to use her walk to raise money for another machine to help other patients get the treatment they needed.

Twice in the summer of 2011, I had seen people in the U.S. who appear to be living with this uncorrected deformity.  Once was in July at the Butler County fair, where a beautiful young woman was walking painfully but gamely, and another time, in Philadelphia where at a downtown intersection a young man was struggling to get across the street before the light changed.  

What if they had had the protection of the ACA and its basic patient protections such as insurance companies no longer being able to discriminate against people with preexisting conditions?  Would they be able to access the amazing treatment Shelly received?  What if doctors and care-givers didn’t have to make decisions about necessary health treatment based on a patient’s health insurance?  Will these people be better off in 2014 when the uninsured can now access health insurance from an affordable new insurance marketplace called the exchange?  

Shelly finished her walk on October 1, 2011.  I am hopeful.