Health 2.0’s Boston Big Data Code-a-Thon

Held at athenahealth, Health 2.0’s Boston Big Data Code-a-Thon was a success!  Health 2.0 handed out more than $10,000 in prizes courtesy of the ONC to the winners of the event and one project will be demoing at MatchPoint this Tuesday afternoon.

The event’s theme was using “big-data” to create and leverage publicly available technologies which intelligently mine, archive, present and visualize massive data-sets. Health 2.0 challenged developers to make sense of high volumes information in a way that will positively influence the care decisions of both providers and patients alike.

The day started off with a little background about Health 2.0’s conferences and developer challenges.  Then the fun began!  People from all fields – developers/coders, doctors, business development, patient advocates, and others – stood up and talked about ideas they wanted to address in health care.  Then teams gathered together, finding common interests and set to work finding massive data sets and integrating them into a useable prototype.

Health 2.0′ers in Boston ready to disrupt health care

Less than 8 hours later, teams presented their ideas to a panel of judges including representatives from AT&T mHealth, AthenaHealth, and Health 2.0.  The ideas were amazing and the prototypes were interesting.  Starting with the runners up:

• Team Data Driven – a way to help people find the healthiest neighborhoods
• I Am Sick – an app to help you and your social circle track your illnesses together
• StayDays – predicting how long patients will stay in the hospital based on their condition
• Aavya Health – visualizing your lab results and providing information on how to change your behavior to reduce risk factors for poor health

In third place with $1,000: Brain Safe – using a sensor, a child can move a ball based on the level of brain waves to assess if they might have a concussion before going on the field for sports

In second place with $3,000: My Better Fit – aggregating common treatments and their side effects, this prototype showed how to find the best (or what might be the worst) regimens for patients.

And the Winner of $4,000 in prizes, a trip to athenahealth’s More Disruption Please conference this September in Maine, and featured on the stage at MatchPoint on Tuesday…

No Sleep Kills who used data from http://healthypeople.gov to understand sleep deprivation and overall health.

This was my first code-a-thon.  I was quite taken aback by the caliber of ideas and actual programs that came together in such a short time.  I can’t wait to see what the Austin Health 2.0′s community will come up with when we have our own code-a-thon this summer – Code Rodeo.  Our cowboy coders will blow them away!

The Materiality of Impermanence by Sharon Marroquin

Photo by Todd V. Wolfson

I was privileged to meet Sharon Marroquin almost two years ago, when she was receiving treatment for breast cancer.  The very first day I met her, she told me about this idea she had to bring forth a performance piece chronicling her journey with cancer.  She told me that she had a friend take pictures of her after her surgeries that presented the stark reality of how her body had changed.  She described this piece that would combine her passion for dance – expressing what lie behind the images as she strived to make sense of her experiences.

This weekend at the Austin Long Center for the Performing Arts, Sharon’s vision is coming to fruition as she presents The Materiality of Impermanence.

A single mother, an elementary school teacher, a renowned choreographer, a friend, and a cancer survivor, Sharon moves everyone she encounters, bringing together all her experiences, her kindness, and beautiful soul to give us a unique perspective on life and death.

I cannot do justice in my writing to her concept and the power of herself and her creation.  Jonelle Seitz of the Austin Chronicle wrote an extraordinary piece in this week’s edition called Here Today.  And you can see a portion of the dance as well as part of the documentary of her life these past years in this film – Mijo – a finalist at the 2011 Breast Fest and shown at SXSW.

MIJO TRAILER from Chithra Jeyaram on Vimeo.

Sharon is truly inspiring and I urge you to attend the show this weekend – The Materiality of Impermanence will be performed March 23-25, Friday, 8pm, Saturday, 2 & 8pm, and Sunday, 2pm, in the Rollins Studio Theatre at the Long Center, 701 W. Riverside. The Saturday matinee is free for cancer survivors and will be followed by a panel on art and healing. For more info, call 474-5664 or visit www.longcenter.org.

I leave you with Sharon’s own words:

MOTIVATION

On January 8^th, 2010, I received a call informing me that I had breast cancer.  Since that moment, the eyes I see with belong to someone I do not know, and my body is a foreign puzzle with missing pieces.  Every day I am newly surprised by the decimation of what my life once was.  Eighteen months, four surgeries, 16 chemotherapy treatments, and 30 radiation sessions later, I want to make sense of this journey.

In order to do this, I am creating a dance: The Materiality of Impermanence.

Turn the clock back a few months, to the summer after my diagnosis. A photographer friend takes some photos of me, and for the first time, I see my body from the outside.  I am astonished to find that the pain and desolation are mixed with, incredibly, an intense and sparse beauty.  I am overwhelmed at the spirit which is manifest in my eyes, and at the fact that, even though my breast is gone, my body holds a magnificence that a scar cannot occlude.  Alone as I inspect the photographs, tears stream down my face.

As a choreographer, I suddenly understand what I need to do.  I have a vision of a performance that expresses the ravages of breast cancer, but also makes clear the be

auty and resilience of the spirit.  This dance, I think, will explore the struggle with uncertainty and the breathless realization that death is a tangible and inescapable presence.  The word IMPERMANENCE echoes within my head.  It is so close I can touch it.

The creation of The Materiality of Impermanence becomes about embracing change.  I struggle to allow my life to alter, and coax myself to release the desire for stability.  Breast cancer shows me that life is as ephemeral as a shifting cloud.  There are times when I am able to accept this truth. There are other times, ho

wever, when I hold on too tightly to what my life once was, refusing to pry my fingers open, lest I transition, floating, into nothingness.

PROJECT SIGNIFICANCE

One year after my diagnosis, The Materiality of Impermanence is my effort to create significance out of overwhelming despair.  Dance has become, not merely something that I do, but the means to understand that although life is fundamentally impermanent, my spirit is stunningly eternal.

http://thematerialityofimpermanence.wordpress.com/

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Privacy Questions

When you ask anyone about health care privacy, HIPAA will ultimately come up in the conversation.  HIPAA refers to the Health Information Portability and Accountability Act.  But most people don’t understand what HIPAA is.  Many think HIPAA is broader than it is, ensuring privacy of all of your health information.  Many don’t realize they need to or don’t want to be compliant with HIPAA or how to do so.  Then there is the ultra rhetoric that every last bit of information should be private. So what is HIPAA?  What does privacy mean with regards to health care?  And what is on the horizon as the world changes to incorporate more technologies in health care?

HIPAA

For full information about HIPAA – go to the Dept. of Health & Human Services, Office of Civil Rights website.

There are 2 parts to HIPAA

1. The Privacy Rule
2. The Security Rule

These rules apply to “covered entities” which include health care providers, health plans, or health care clearinghouses and their “business associates” or people that do work on behalf of the covered entity (e.g. billing).  Covered entities must comply with federal rules and regulations to ensure the privacy and security of “protected health information” (PHI) and to give patients rights to access their health information.  PHI is broad and covers almost all of the information associated with your health care you can think of.  To comply with HIPAA Covered Entities must have policies and procedures in place to train their staff and volunteers on both privacy and security.  They have to name a Privacy Officer and a Security Officer to report breaches of privacy to.  They have to be able to account for each disclosure of information of a patient’s health information if asked.  They have to have certain technologies on their computers to ensure data can’t be hacked (basically).  They have to have to notify individuals and in some cases the Secretary of HHS of privacy breaches.  And if they have Business Associates, they have to get assurances that the Business Associate will have their own policies and procedures for keeping PHI safe.  And many more requirements.  Otherwise they face steep fines (up $1.5 million annually in civil penalties and up to $250,000 and 10 years imprisonment in criminal penalties) (Blue Cross Blue Shield of Tennessee just settled a privacy breach case).

HIPAA was further strengthened and expanded by the Health Information Technology for Economic and Clinical Health (HITECH) Act of the American Reinvestment and Recovery Act (“Stimulus” bill) that was passed in 2009.  HITECH strengthened sanctions for HIPAA violations (to the extent listed above) and expanded requirements for the interactions between Covered Entities and Business Associates

What is private?

Most people think HIPAA covers all of their health information, but it doesn’t.  Privacy is up to the discretion of anyone who is not a Covered Entity or a Business Associate.  For instance, a website or phone application that tracks certain health information.  Or a personal health record stored online

There are other organizations that don’t think they have to comply with HIPAA because they don’t realize they are business associates and thus don’t have the proper policies in place and can’t keep your PHI safe or privat.

As such, when giving your health information to anone, and you want to keep it private, ask about their privacy policies and/or training procedures.  Then decide if you want to share that information.  Training for organizations should be intensive and all incorporating.  Policies should be clear and posted on a website or easily accessible when asked.  After you have this information, consider what you do/don’t want to share

The Future of Privacy

The future of health technologies is incredibly exciting.  I was thrilled to get to go to the Health 2.0/StartUp Health party at SXSW in Austin this week where I met a whole crowd of innovators – engineers, software developers, students, professors, venture capitalists, designers.  How incredible to hear what the future of health care might look like!  The ideas are boundless and will surely empower patients to and engage doctors in improving health.

But as I told many people there, they shouldn’t necessarily worry about current policies regarding privacy and security of health information, but policies to come.  These companies and entrepreneurs will have to set the standards for this field which will be intensely scrutinized as more people explore where their information is going and what that means.  Currently, there are very few guidelines as to what needs to be kept private and how to do so and the consequences for breaches of privacy in health information.  Electronic Health Records are maintained by providers and thus will be subject to HIPAA, and HIPAA along with HITECH is probably sufficient to keep PHI private.  Even then there is a lot of discussion of whether more regulation needs be in place

What about other applications and websites.  There are some pretty impressive ones out there.  Microsoft Health Vault has a great way to create a personal health record.  Simplee.com helps individuals understand their health care expenses – making the Explanation of Benefits (EOBs) you get in the mail understandable.  There’s Ginger.io that turns your mobile data into health insights such as behavioural patterns.  And there’s Medify whose mission is to help “people managing important health situations discover what works for people like them, and to get help from those they trust most.” At SXSW, I met people from Solvable.co, MedTouch, Learn It Live, a bunch of innovators who have worked with StartUp Health, and many others.  I didn’t even touch. But my favourite new website is PatientsLikeMe which allows you to track symptoms of your conditions, give feedback on treatments, and talk to others who have similar conditions or use similar treatments.  Yet with all of these ideas, and more coming each day, where does privacy stand?  As I said, it’s up to the developer or company.  And it’s up to you.

Should it all be private?

Should all health information be private?  PatientsLikeMe proposes an interesting idea of openness.  Yet most people want to keep their information private at all costs.  This is understandable – having your information released can affect many aspects of your life from employment to purchasing life insurance (luckily under the Affordable Care Act pre-existing conditions won’t matter) to lawsuits to relationships.  Health conditions come with stigmas whether physical or mental unfortunately which negatively impact many peoples’ lives.

But what if we were more open about that information?  Some worry about others obtaining their genetic code – but what would we do with all that information?  Maybe we fear too much.  And if we are all more open, could we bring down the stigmas that hold us back?  And if we are more open, will we improve health care?  To that last point, PatientsLikeMe thinks we can.  They have an interesting “Openness Philosophy.”  I myself was tentative as I explored the website, but it truly is the most integrative site I’ve seen and perhaps one of the most useful that’s come out.  But a lot of the information is public.  So each individual has to consider whether they want to be open.  I have shared some, but am I ready to share more?  And what privacy will exist when I ask my doctor to see my record?  Or when someone wants to talk to me about my conditions and treatments?  It’s a scary thought, but I am taking that leap (at least a tiny one) after reading their philosophy…

Our Philosophy – Openness is a good thing.

Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept.

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.

Will you add to our collective knowledge… and help change the course of healthcare?

Privacy Questions

Maybe health information shouldn’t be completely private?  Maybe we should break the stigmas of our conditions?  Maybe we should realize that any policies in place will never truly and completely keep our PHI private and secure?  We have HIPAA but many misunderstand it and many don’t use it properly and we don’t know exactly what will come with new technologies on the horizon. So the privacy questions remain – what is privacy of health information?  And what will it be?

Book Review – Blood Work: A Tale of Medicine & Murder in the Scientific Revolution

I could not put down Blood Work: A Tale of Medicine & Murder in the Scientific Revolution by Holly Tucker an associate professor at Vanderbilt University’s Center for Medicine, Health and Society.  After hearing an interview with Tucker on a Stuff You Missed in History Class podcast, I knew I had to check this book out from the library.

Blood Work chronicles the fascinating story of the first transfusions in the seventeenth century particularly the first human blood transfusion by Jean-Baptiste Denis. Tucker explores not only the methods by which this transfusion took place, bringing to life an incredible leap in medicine, but she delves into the politics and histories of both England in France in that era.  She sets the stage for Denis’ and other scientists’ experiments amidst the rise of France’s Sun King – Louis XIV – and the instability of an England damaged by plague and fire, with each country seeking to build and prove their strength, genius, and superiority.

The history of these two nations alone is fascinating, but then she takes the reader into the world of medicine, eliciting ethical arguments that continue today.  As Tucker says as she watched George W. Bush’s 2006 State of the Union Address, “History was repeating itself.”

Richard Lower conducted the first dog-to-dog transfusion experiment in 1665.  In 1667, Jean-Baptiste Denis performed the first animal-to-human transfusion between a fifteen-year-old boy and a lamb.  Tucker presents the incredible details of these and other experiments re-counting the gruesomeness of the techniques in an age without anesthesia.  The rudimentary instruments and the macabre curiosity of the scientists are astounding to read of in this modern age of medicine. But all was in pursuit of something we take for granted and has saved so many lives.

In the 1660’s, medical science still held fast to theories of “humors” or the idea that illnesses were caused by the imbalance of different bodily fluids.  And bloodletting was a common practice to rid a person of the specific humors causing their ailments.  So why would one want to transfuse blood?  These doctors were not concerned with blood loss obviously, so they were not transfusing to replace lost blood.  Rather, they both wanted to simply investigate how bodies worked and wondered if perhaps introducing the blood of another animal would change the humors of their ill patients.  In Denis’ case, he wanted to cure a “madman” – a once “perfectly mannered and well-dressed valet” for the nobles who developed a mental illness l=such that he was often naked in the streets or muttering incomprehensibly. Doctors experimenting with blood transfusion thought that the blood from an animal like a lamb would have “cooling effects.”  Under the theory that imbalanced humors were to blame for illness, they felt that madness and other ailments like fevers were caused by the blood being too hot.  Thus if they could rid the body of the “hot” blood and replace it with the blood of a lamb, they hoped to see improved health.

Though the initial transfusions seemed successful, the madman died and murder accusations arose.  Blood transfusions would not be tried again until 1818.

These scientists were investigating uncharted territories that carried ethical questions about, as Tucker concludes, what it means to be human.  Mixing animal blood with human blood left some in the seventeenth century with nightmares about chimeras – half monkey-half human beings arising out of mixed blood.  Such mixing, some believed, would corrupt the human soul and must be stopped.  Before chuckling at such ignorant fears, we must recognize that such fears still exist as we research embryonic stem cells.

In President Bush’s 2006 State of the Union Address that prompted Tucker to write Blood Work, he called for “legislation to prohibit the most egregious abuses of medical research: Human cloning in all its forms; creating or implanting embryos for experiments; creating human-animal hybrids; and buying, selling, or patenting human embryos.”  Like those imagining chimeras from blood transfusion, the president echoed fears of embryonic stem cell research that many still hold.  He continued to voice his religious beliefs stating “Human life is a gift from our Creator, and that gift should never be discarded, devalued, or put up for sale.”   With these words and his political ambition, embryonic stem cell research  was stalled for years in the belief that such research was “devaluing” human life.

Religious beliefs and political ambition impact science in every era from the space race to the invention of robotics to stem cell research.  Today we controversially culture embryonic stem cells and clone cells and experiment with these cells to see if they can heal us.  We have great hope to gain new insights, but cannot know what our findings will bring.  As we investigate these cells, we wonder whether these cells are already human beings?  Will we create clones to be our disposable donors (see the book – Never Let Me Go by Kazuo Ishiguro)?  Will putting human cells in animal bodies or vice-versa create human-animal hybrids?  The questions are seemingly endless but ultimately we all ask the same question – who are we?

In every era we strive to understand the body and thus what makes us us.  We create robots to mimic the movements of man and understand how to treat injuries.  We create computer systems that reason (i.e. Watson).  And we wonder what might happen if a robot can move and think like a human, are they human?  (questions explored introduced to me by Isaac Asimov’s writings on robots) We transfuse humans with blood from another.  And we wonder if that blood from the other becomes part of us or transforms us into the other?

We will forever face questions of who we are and what separates us from all that surrounds us. These questions inspire us to curiously seek the truth through scientific endeavors.  But it is also the question that gives us hesitation as we fear what might be, fears we find were ignorant in hindsight.

Blood Work is an exceptional telling of the first blood transfusions and the history, politics, and ethics of English and French cultures of that time (as Tucker solves a centuries old murder mystery).  But it is also a telling of every scientific revolution.  Cultures may evolve (or devolve) to an extent, but in any age religious and ethical concerns and political ambitions will provide obstacles to the scientific discoveries that will change our world.

Costs of Care Video – What if your hotel bill were like a hospital bill

Please see the blog post on the Costs of Care blog for the background on this video.  I wanted to post the video here as I think it does a great job of bringing to light the absurdity of hospital care.  Most who end up in a hospital do not “let” anyone take care of them, they NEED and MUST have care.  The doctors and nurses and staff are doing their best job to treat the patient.  And the goal is to get them physically well before leaving.  When the doctor decides to release you, you’re told your better.  But truly you are only part way there.  In the healing process that comes after hospitalization, you face the destructive forces of finances that are irreparably affected by your need for care whether you have insurance or not.

As I said in a previous post, we discuss the cost of care to society by not the affordability of care to the individual.  The costs of care for each individual are staggering and life altering.

Now, as this video parodies, what if an overnight stay in a hotel were like a stay in the hospital?  We would never accept it.

While the law is changing to ostensibly address “costs,” I have a fear that none of the ideas thus far proposed will really make health care more affordable or transparent.  Focusing on patient satisfaction, developing accountable care organizations, implementing health information technology, will change the landscape of care delivery but NOT affordability and the cost to individuals – the costs to live.

Understanding Health as a Human Right When Resources are Limited

While several other misunderstandings about health as a human right and how we achieve that through health care, I want to address the position many take that if we recognize health as a right, we are essentially allowing means that people must have affordable access to any and all treatment.

Health is in fact a human right as recognized in international law and codified in:

• The Universal Declaration of Human Rights
• The International Covenant on Economic, Social and Cultural Rights
• The preamble to the WHO constitution
• The Additional Protocol of the American Convention on Human Rights
• Protocol of San Salvador
• The American Declaration of the Rights and Duties of Man
• The Convention on the Elimination of All forms of Racial Discrimination
• The Convention on the Elimination of All Forms of Discrimination Against Women
• The Convention on the Rights of the Child

Limits on Health Care as a Right:

I think the fundamental misunderstanding of health as a human right is that people believe that as a right it allows every person to have access to the newest and greatest medical technologies and treatments. While health is a right, the means to achieve health through the provision of health care services, is limited.  The demand for health care is unlimited and outstrips the supply, we all recognize, resources are limited.  But this does not mean health cannot be a human right -right exists, but it is not boundless. We must face the ethical questions of what this right provides – this surely just as difficult a question as addressing other human rights such as the right to food, clothing, and housing.

The South African case Soobramoney v. Minister of Health ((KwaZulu-Natal), 4 BHRC 308 (Constitutional Court, South Africa 1997)) helps us understand health as a human right can in light of limited resources.  In this case, an man with type 2 diabetes needed dialysis because of kidney failure and he requested treatment at a hospital that did not have a enough dialysis machines to provide him the treatment he needed.  Because of the limited resources, the hospital could only afford to put patients on dialysis if they were eligible for a kidney transplant, which this man was not.  This is truly unfortunate, we wish that we could provide everyone the best of care but we cannot.  It does not mean that health is not a human right, it just means that right has limits.  In fact the court said the right cannot “be extended to encompass the right indefinitely to evade death.”

Consider the right to speech or the right to bear arms.  These are rights recognized and ardently fought for in the United States.  But the courts know these rights have limits as well.  Free speech does not apply to child pornography or speech that incites imminent lawless action. Free speech finds limitations in the areas of copyrights, patents, advertising, slander, defamation, among others.  The right to bear arms is limited by gun control laws which require background checks or restrict some individuals convicted of felonies from possessing firearms.  These limits though do not lessen the fact that these remain rights in America.

Nor do limits on health lessen the fact that it remains a right, one that American must recognize not only to uphold the commitments we’ve made in international treaties but also because it is a moral imperative.

_______________________________

Note:

Several other countries have addressed the issue of health as a human right particularly in regards to access to essential medicines (as defined by the World Health Organization) including Argentina, Brazil, Bolivia, Colombia, Costa Rica, Ecuador, India, Nigeria, Panama, San Salvador, and Venezuela.

Affordable Mental Health Care in America

Access to and affordability of mental health services is dismal in this country.  In continuing the discussion about affordability of health care in America, below I discuss issues of access specifically in regards to mental health care in light of the Mental Health Parity Act (MHPA) and the Affordable Care Act (ACA).  While these laws have made some small progress to improving access to of mental health care in the private insurance realm, many still are unable to receive the treatment they need.  In truth, I do not think w will see a meaningful increase in access mental health care because even in light of these policy changes, it remains unaffordable.

Changes to Cost:

Before the MHPA of 2008, private insurance could set different coverage limits on mental health services.  The MHPA changed this, requiring insurers to cover mental health like medical/surgical benefits.  But it still allows an employer to restrict the extent and scope of this coverage.  I think most people assume this parity means mental health services that are covered are as extensive as medical/surgical coverage, but really it means that the copays, coinsurance, and deductibles, and lifetime & annual limits for services are the same.

By 2014, the Affordable Care Act prohibits insurance plans from imposing annual dollar limits on the amount of coverage an individual may receive – this would apply to both medical/surgical coverage and mental health coverage because of parity.  Before, an insurance plan could stop paying on your benefits after your total medical costs were over $500,000 that year, if that were the limit they chose.  This includes all medical, surgical and mental health benefits.  This is a problem if you have a serious mental illness and are hospitalized several times or need intensive inpatient treatment (which they may or may not cover) and you need prescriptions for your mental health or have comorbid/coexisting conditions like type 2 diabetes or cancer.  That limit could be reached fairly easily, leaving an individual to pay the rest of the expenses out of pocket.  But as of September 1^st last year, they must cover at least up to $1.25 million.  Next year that will be raised to $2 million.  And by January 1, 2014 they cannot have any limits.  So no matter what care you need, medical, surgical, mental health, you will only pay your premium, copays, deductibles, and coinsurance amounts.

Expanding Services Covered:

The services covered under an insurance plan – i.e. which providers you can see, what diagnoses/illnesses are covered, how many visits they’ll pay for – still varies by insurance policy.  Each state has its own rules on what insurance plans must offer.  Thus, unless codified, insurance policies do not have to offer coverage for mental health services that they do not want to cover.  In Texas, the legislature has debated whether insurance plans must cover treatment for eating disorders.  Currently, insurers do not have to consider that a “serious mental illness” and thus do not have to offer coverage for an insured seeking treatment for that condition.  Thus, even if you have some mental health coverage, it may not treat the conditions for which you need help.

Under the ACA, individual and small group insurance plans must cover certain “essential health benefits” (EHBs).  These are meant to be a comprehensive set of services and include “mental health and substance use disorder services, including behavioural health treatment” coverage.  However, EHBs are not yet defined and there is a lot of controversy as the rules and regulations are developed. As of now, the Department of Health and Human Services is primarily leaving it up to the states to decide what counts as an EHB.  So while mental health must be covered in small group or individual plans, at what level or which conditions depends on where you live.  However, mental health coverage for these plans should be similar to large group insurance plans which will be used as benchmarks.

Regardless, even if insurance does cover mental health illnesses that a particular individual person suffers from, many mental health providers will not accept private health insurance, rendering coverage fairly meaningless.  Certainly, insurers have to have to be contracted with therapists in your area. They have to provide “network adequacy” meaning that you should be able to find a mental health provider that will take your insurance and they can give you a list of those providers.  But because few providers take insurance, the ones that will take your insurance may be backed up, their schedules full.  Now, an insured can request a “special exception” or “in-network exception,” but this is a bit complicated and frustrating at times.

Removing Pre-existing Condition Exclusions:

Currently, insurers can refuse coverage for pre-existing conditions, including mental health illness.  They can deny coverage if the condition was documented or if a reasonable person would have known they had an illness.  This created an interesting situation for individuals filling out intake forms for their health care providers or what health care providers might put in their notes in terms of what documentation exists to show you knew you had a pre-existing condition.

Many group plans do not have pre-existing condition exclusions (partly because the risk is spread out among a larger population).  But when someone loses a job or leaves for a smaller employer or self-employment, they may lose that coverage (if they can afford it, and the employer keeps providing insurance, the former employee can stay on the insurance plan by paying the premium out of pocket, which gives them 18 more months of coverage).

When losing health insurance, the insurance company must send you a certificate of creditable coverage.  Creditable coverage generally means that you were insured within the previous 60 days.  With the certificate, you may avoid limits on pre-existing conditions when you apply for insurance again.  But creditable coverage only lasts those 60 days.  So if you applied for insurance on day 61, insurance companies can exclude your pre-existing conditions.

As part of the ACA, by 2014 an insurance plan cannot consider refuse to cover pre-existing conditions including mental health conditions.  Already, under the ACA, insurers cannot limit or deny coverage for pre-existing conditions for children.  This will be expanded to adults in the next few years.  Additionally, in 2014, insurance plans cannot charge higher premiums, put lifetime limits on coverage for key benefits, or deny coverage because of a mistake on an application.

Until 2014, individuals with pre-existing conditions who cannot afford insurance or whose employer does not provide insurance can get coverage through their state’s Pre-Existing Condition Insurance Plan (PCIP).  Some states also have high risk pools, but PCIP is much more affordable.  The drawback being that you have to have no insurance coverage at all for 6 months prior to applying for PCIP and for high risk pools as well.  PCIP will only last until 2014 when insurance plans can no longer deny or limit coverage for pre-existing exclusions.

Do current policies increase access to mental health care? 

Theoretically, considering mental health parity and the elimination of annual dollar limits on coverage, coverage for EHPs, and insurance plans no longer restricting coverage of pre-existing conditions, yes.  But this won’t happen for two more years really.  And ACA does not change what exactly insurance plans will cover – other than the obscure EHBs.  Nor does the ACA require mental health care providers to accept health insurance, so finding a therapist who treats your condition (if it is covered) is contracted with your insurer can be a huge barrier to access.  The ACA does not put limits on premiums, co-pays, co-insurance, or deductibles.  Premium increases (the amount they change from year to year) must be reviewed and are limited.  But premiums can still be really high.  More “affordable” plans, mean higher deductibles, co-pays, and co-insurance.  And these monetary barriers do not just effect your ability to see a medical or mental health care provider but also your ability to afford medications as prescribed by those providers.  In addition, we must consider whether there are even enough medical or mental health care providers to even address and treat mental health conditions.  So even if the ACA provides slightly better access, that access can be limited if there aren’t enough providers to help everyone.

Though policy changes are making small positive changes in addressing mental health care in America, is there really increased access to mental health care? No.

Affordable Health Care in America

Recently, I was asked to provide comments on the affordability of health care and mental health care in America today in light of new policy changes.  In this 2-part series, I wanted to share my thoughts on these issues.

In American politics today the current discussions center on the cost of health care to the nation but neglect to discuss the affordability of health care for its citizens.  Health is a human right, as a right health care must be accessible to every individual in order to realize this right, and thus must be affordable.  Whether covered by a private insurance policy, a government health plan, or their own savings, Americans know that health care is patently not affordable in this country.  Copays, deductibles, and coinsurance rise each year putting an increased burden on each individual to obtain the care they need.  Often this means a complete barrier to health care.

This in mind, we must consider that access to health care does not just apply to seeing a doctor but encompasses all aspects of health care including pharmaceuticals, mental health care, and specialist care.

Pharmaceuticals

I have already harped on this point several times, but feel it is worthy of presenting yet again.  As I wrote in earlier posts on the Cost of Living, studies show:

• Since 2006, prices for the top 100 commonly used medications rose by 6.6% according to the Government Accountability Office compared to a 3.8% increase in medical costs
• In 2009, prescription drug spending totaled approximately $250 billion
• In 1996, out-of-pocket spending for prescription drugs averaged $247
• In 2001, 21% of adults spent 10% or more of their income on out-of-pocket costs.  In 2010, 32% of adults spent 10% or more of their income on out-of-pocket costs
• In January 2011 alone, the cost of 75 top-selling drugs rose another 4%
• Because of the expense, more than 25% of those prescribed a medication don’t take it and 23% cut their pills in half or skipped doses

Yet pharmaceutical companies are left unchecked, holding monopolies on patents for life-saving medicines. You may note the very few provisions for changes in access to pharmaceuticals in the Affordable Care Act (ACA).

Pharmaceuticals are a key part to health care.  While the generic market has made pharmaceuticals affordable and while the “donut hole” fix by the Affordable Care Act has helped and will continue to help seniors on Medicare afford their medications, many pharmaceuticals are still too expensive.  Generics do not exist for many medications.  Co-pays or co-insurance still place a high financial burden on patients. Some drugs are exorbitantly expensive, which is not helped by recent drug shortages.  There are are patient assistance programs offered by many pharmaceutical companies, but these are only available to those with very limited income and no health insurance.

Consider for instance that, according to the American Cancer Society, the average cost of a 30 day cancer drug prescription was more than $1,600 in 2006 and it’s even higher today.  Last March, Forbes.com brought light to the high cost of cancer care in the wake of Geraldine Ferraro’s death.  They highlighted her comments in 2007 on the cost of treating cancer, which really apply to every type of care.

It just is a very, very expensive thing to do, very expensive thing to do, and that’s the one thing that bothers me,” she told Today. “Having to come in twice a week, that doesn’t bother me. What bothers me is that what’s available to me is not available to every person who has cancer in this country and it should be. It should be.”

Mental Health

(I will discuss more on how the ACA will effect access to mental health care in the private insurance sphere in the next post.)

Health care also includes mental health.  Though laws have been around for years espousing mental health parity (meaning mental health benefits must be provided at the same level as medical/surgical benefits with respect to the application of aggregate lifetime and annual dollar limits under a group health plan), which would effectively mean mental health care should be as affordable and accessible as going to your primary care doctor, affordable mental health care is rare.  Often those struggling with mental health illnesses have no means to address their conditions with mental health professionals.  And as research shows, when mental health illnesses are not treated, a person’s entire health declines – sometimes meaning that person will end up in the hospital.

Specialty Care:

What happens when you break your elbow and need surgery and physical therapy?  Or need a colonoscopy?  Or have need a stent put in your heart for heart disease?  Or are diagnosed with cancer?

The cost to see a specialists like an orthopeadic surgeon, physical therapist, gastroenterologist, cardiologist, oncologists – let alone the procedures they may prescribe – is out of most American’s financial means.  And the barrier of affordability may delay treatment for those who desperately need treatment.  February is American Heart Month, and the American Heart Association tells us that

…nearly half of cardiovascular disease patients who said they had difficulty paying medical expenses had delayed getting needed health care and filling a prescription, 42 percent had delayed a routine check up, and 31 percent had delayed a screening test that helps identify disease earlier.

While having insurance will help many gain access to specialty care, again the co-pays, deductibles, and co-insurance may still prevent many from affording the care they need.  It took me 4 years to pay off my knee surgery for a fairly simple surgery for a torn meniscus (a tear which literally made it impossible for me to stand up after I fell because the torn portion got lodged between the joint) and even then, the doctor who performed the surgery finally gave up on me being able to pay the bill and waived a huge portion of the bill.  I had insurance, but the cost of care was extraordinary.  I couldn’t even afford the physical therapy needed after the surgery.   I spent my college funds on jaw surgery for a deformity I grew up with which left me unable to eat solid foods by the time I was able to have the surgery.  Then too, I had insurance and the costs were beyond my means thou I was lucky to have some resources at the time which many do not.  And in expending those resources for care I needed, I then placed myself in debt which will take me decades to pay off. Debt which grew when I was diagnosed with type 1 diabetes and celiac disease.

What about the millions of Americans who need surgeries, tests (like MRIs or X-rays), and procedures for their injuries and illnesses.?  Specialty  care is simply not affordable in America and the ACA does not provide much relief.

Affordability of Health Care in America:

We do not have affordable health care in America and thus we do not recognize or protect health as a human right.  We must strive to ensure affordable health care for all in regards to primary care, specialty care, pharmaceuticals, mental health care, and other aspects of health care.

Though our rhetoric centers on the rising costs of health care, this is not the reason that health care is unaffordable to individuals.  Health care costs are high but that is more a product of the commercial enterprise health care has become.  Health care can always be affordable if we are concerned about people being healthy. In fact, health care is more affordable when we choose provide it now, then when we have to provide it in an emergency circumstance in the future for someone who did not get preventive care.

As a health policy attorney, and through my own personal experiences, I have seen how so many struggle to afford health care.  I have seen many blame and judge others for their health and financial circumstances instead of assisting them to become and remain healthy so they might realize their full potential.  I have seen many refuse to even recognize the problem, themselves not having had to face the obstacles of obtaining health care.  Few are willing to realize that the copays to see our doctors and get the tests we need, the expense of pharmaceuticals to attend to our health, the amount we pay to receive mental health care, are all the costs to live – costs that are too high for many.  I have watched the government in small steps and against political rhetoric and infighting  try to make care more affordable, but they are not doing enough.  Health is a human right and should not be extended to only those who can afford it, but to everyone, wherever they live, whatever government, laws, or policies they are under, no matter their race, national origin, sexual orientation, religion, age, disability, or gender.

Vast disparities of wealth and opportunity divide us… Nowhere are the disparities more shocking than when it comes to health… The wonders and promise of modern medicine must reach everyone, not just a privileged few. (http://www.oneworldhealth.org)

Some drugs are exorbitantly expensive, which is not helped by recent drug shortages.

What is a Human Right? – The United Nations Explains

These short YouTube videos explain what human rights are and more about the UN processes that develop and monitor compliance of human rights. They’re short and simple and quite informative.  Enjoy.

WHAT IS A HUMAN RIGHT?

WHAT IS A HUMAN RIGHTS TREATY BODY?

WHAT IS THE HUMAN RIGHTS COUNCIL?

Happy Birthday, New England Journal of Medicine

The New England Journal of Medicine (NEJM) turns 200 this month.  First published in January 1812, this seminal publication has provided us with invaluable peer-reviewed research articles, editorial, and case reports.

The first issue had articles about croup, gunshot wounds, burns, syphilis, and spina bifida to name a few.  The latest issue  (January 5, 2012) has articles on heart disease and a herpes vaccine. In the centuries between, NEJM has covered a wide range of medical science, bringing the latest medical findings to not only our future doctors, but to the public.  NEJM articles studied the progress of epidemic diseases such as cholera, tuberculosis, and smallpox.  NEJM articles documented therapeutic innovation including the increased reliance on evidence based treatments proven through scientific experiments and peer review of the findings.  NEJM articles debated germ theory, introduced medical technologies like stethoscopes and  MRIs and published the first study linking smoking to lung cancer.  The impact of this publication cannot be understated in all its brought to us.

So Happy 200th Birthday, New England Journal of Medicine!

Thank you for all you’ve given us.

For a really amazing interactive timeline o the past 200 years of the NEJM go to – http://www.nejm.org/doi/full/10.1056/NEJMp1114819