SNL Ebola Parody Reminds Me of Living With Chronic Illness

October 7, 2014

From the moment she said “I have Ebola” and he gave her “that look” – the look of “what did I get myself into?” and “I’m not so sure about this all of the sudden…” – I knew that this SNL parody: The Fault In Our Stars 2: The Ebola In Our Everything (video below) really described trying to have a relationship when you have chronic illness.

Read the rest of this entry »

Not Meant to Be

March 13, 2014

I don’t believe in the phrase “it was meant to be” or “this is all happening for a reason” because I can’t believe that people are meant to be hurt.  I can’t believe that children are meant to starve to death or women abused.  I do think that when something happens, even though it’s not meant to be, we have an opportunity to create change.

If you follow me on twitter you will see that I’ve been tweeting a lot about my experience with St. David’s HealthCare.  I have never seen or experienced so many medical errors and medical record errors in one person’s case.  What astonishes me aren’t the individual errors alone but the number of errors – a true systems failure where there were inexcusable errors at every single point of care.  Honestly, it is amazing that I am physically okay considering the errors made – the potential that I could have died.  But the mental recovery is ongoing as I process my personal experience and consider how to use the opportunity to ask for change in the medical system. Read the rest of this entry »

My Abuser Found Me Online

October 27, 2013

Abuse is a serious worldwide health and human rights issue.  According to the World Health Organization 35% of women worldwide have experienced either physical and/or sexual violence.  This of course does not include abuse towards children or men.  It does not include emotional abuse.  And in our age of technology, it does not include an ever more prevalent issue of abuse through the internet.

Almost 13 years after leaving my abuser, last night he found me and contacted me through Google+.  I found myself feeling the victim again.

When I left my abuser, I hid.  I hid where I lived and what I did.  I hid my online presence.  I did not want to be “googleable.”  I would frequently check to make sure I wasn’t easily searchable. But as my voice grew stronger and my professional and personal life took me in new directions, I didn’t want to hide anymore.  I knew I had something to say as an ePatient, as a defender of health as a human right.  I wasn’t willing to hide. Read the rest of this entry »

Askimo TV Interviews on Health Law and Policy

March 30, 2013

I was recently asked to give a series of expert interviews for Askimo on various subjects in health law and policy.  Askimo provides three main services:  it is a free library of 4-10 minute interviews with experts from around the globe, speaking on issues about which they are most knowledgeable. It could be a tax law or a medical disease — knowledge that is practical and can help in daily life.

“I like knowledge,” said David Butnaro, owner of Askimo, based in Tel Aviv, Israel, and soon to have an office in Maryland.  He describes Askimo as “a cross between Wikipedia and TED.”  Currently, the platform has close to 3,000 videos in its library in languages ranging from English to Hebrew to French; 60 percent are in English.

I really enjoyed this opportunity to translate complicated health law and policy subjects and introduce some new ideas like ePatients (I hope I did all ePatients justice) to the world.  Who knows how this knowledge will impact someone’s life.

Below are links to these interviews.

Note – I look forward to the Supreme Court’s decision in FTC v. Actavis after oral arguments this Monday, March 25, 2013, exploring the legality of Pay-For-Delay Settlements.

I also look forward to the Supreme Court’s Decision in Myriad Genetics which will discusses the patentability of the BRCA-1 and-2 genes and the processes to test for them as discussed in “Genetic Patenting” above.

Forming Nebular Health Tech in Austin

March 22, 2013

I want to repost this post from the new Nebular Health Tech group founded today in Austin, TX.  As you can tell from this blog, Health IT is incredibly important to me as a human rights advocate, an ePatient, a lawyer, and an activist.

Here is the story about forming Nebular Health Tech in Austin:

While other posts may be more innovation news oriented (guest posts welcome!), I wanted to start with a post about the formation of Nebular Health Tech – what this group is about, who we are, what we’ll do, how we can make a difference in health and healthcare.

What Nebular Health Tech is About:

Nebular Health Tech formed after an explosion of ideas and people coming together in Austin for the development of ideas and solutions around Health IT.  Starting in April 2011, I started cold calling and hitting the ground to meet as many people as I could interested in health in any way – payors, designers, developers, marketers, providers, patients, etc.  At the same time, I formed a Health 2.0 Austin chapter to gather us together to connect and foster innovation.  We started holding monthly meetings – our first presented by DocBookMD and Visible Health in the summer of 2011.  We had fun social gatherings around town.  In October 2011, we held a code-a-thon.  By then the listserv had grown to almost 400 people.

But Austin’s group needed a new direction – something truly unique to our community.  Austin needed a place where limits could be broken and new ideas could spark.  After a few months of hibernation and personal loss, I thought and others told me that we needed to gather again, we needed to reignite – it was too important not to.  And so the idea of Nebular Health Tech began.

As I started to think how we could rekindle, I thought first of a phoenix – rising anew from the ashes.  I then came across the Phoenix Cluster, a nebula having been dormant for possibly billions of years but now know to be one of the most active nebulae forming about 740 new stars per year.

And, I thought how perfect this image fit our community – the phoenix, star creation by joining forces, the wonders of space that have for all time sparked imaginations and led to some of the most important innovations.  We may feel nebulous, but we can come together to form something amazing and world changing. This is who we are and what we can be.

Who We Are:

Nebular Health Tech is everyone.  We are patients, providers, entrepreneurs, hospital administrators, policy makers, hackers & coders, pharmacists, insurance companies/payors, UI/UX’ers, reporters, social media experts, startups, engineers, quantified self’ers, VC’s & Angel Investors, caregivers, mental health providers, teachers, gamers, students, marketers and most importantly

All who want to break boundaries and change the world.

Nebular is founded on the values of innovation, inclusiveness, mutual support, and openness.  The group only works if we are all coming together to create momentum for change.

What We’ll Do:

Nebular will continue the traditions started in 2011 with monthly meetings, social gatherings, and events.  Our first event will be at projekt202 as we discuss how their Interaction designers collaborated with providers to change the principles of user-centered design.  Our next event will feature Regina Holliday and the film about her mural “73 Cents.”  And as these are planned, we’ll send out emails and use social media to invite everyone to join us. (follow us on Twitter @NebularHlthTech).

From there, who knows? We can organize events and meetings however we want.  Nebular welcomes ideas to gather and discuss health IT, for all of our healthcare innovators to make connections, to encourage making solutions for health and healthcare, and perhaps to work with community leaders to create an incubator/accelerator to carry those solutions forward.  We’ll support any ideas and initiatives to bolster the health IT community in Austin.  We can hold other events, partner and team up with other organizations, and just enjoy each other’s company.

How We Can Make a Difference:

There’s no telling what we can do once we get the momentum going.  Our collective talents, knowledge, passion, and personal experiences can help us create stars.  As nebulae, we and the impact we have on the world will be boundless.  I hope you will join us.

The molecules of your body are the same molecules that make up the nebulae that burn inside the stars themselves.  We are star stuff. – Victor Tenbaum

Affordable Mental Health Care in America

February 9, 2012

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 1st 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.

Help the Homeless

January 6, 2012

We are all one step away from  homelessness.  The security we have in our jobs, homes, and family can disappear in the blink of an eye.  Homelessness does not just happen to those who made “bad” choices in their lives, people on drugs or convicts.  Homelessness can happen to those who lose their jobs or affected by natural disasters.  Homelessness affects those with mental illness who cannot find the services they need.  Homelessness affects those leaving abusive situations.  Homelessness affects our children who are neglected or rejected because of their sexual orientation.  Homelessness affects those who served our country and fought for our freedoms.

The homeless are our neighbors, our peers, our friends forgotten.  The homeless are us. 

While no count of the homeless is quite accurate:

  • There are 730,000 people experiencing homelessness on any given night in the United States.[1]
  • Of that number, 238,110 are people in families, and
  • 404,957 are individuals.
  • 17 percent of the homeless population is considered chronically homeless and
  • 12 percent of the homeless population – 67,000 – are veterans.[2]
  • 3 million people, 1.3 million of them children, are likely to experience homelessness in a given year.[3]

What might keep someone homeless?  It’s not a lack of will to pull oneself out of such a situation.  Who among us would choose to remain homeless?  Such circumstances are embarrassing and degrading.  We must understand why our neighbors are homeless in order to help them.  Many factors are involved – finding affordable housing, finding a job, physical ailments or mental health issues and no services to address them.  According to the US Department of Housing and Urban Development (HUD) a family with one full-time worker earning minimum wage cannot afford rent for a 2-bedroom home anywhere in the US.  In other words, a single mom or dad with 2 kids cannot afford a home even if they are working full-time.  Imagine if those kids needed medical attention or they were laid off?  What then?

Why discuss homelessness on a health blog, because homelessness and health or inextricably linked.  About half of the homeless have suffer from mental health issues – many are schizophrenic.  Almost half of the homeless have addiction issues.  Yet they do not have access to treatment for these issues.  Those who are homeless often cannot seek treatment for physical illnesses like HIV/AIDS or diabetes (type 1 or 2) or afford medications to treat them. And even if they were to get the medication, where would they keep it?  How could they refrigerate their insulin or safely keep the needles to inject it with? And if they cannot help themselves, they often end up in emergency rooms.  According to a report in the New England Journal of Medicine, homeless people spent an average of four days longer per hospital visit than comparable non-homeless people. This extra cost, approximately $2,414 per hospitalization, is attributable to homelessness.[4]  A study of hospital admissions of homeless people in Hawaii revealed that 1,751 adults were responsible for 564 hospitalizations and $4 million in admission costs. Their rate of psychiatric hospitalization was over 100 times higher than their non-homeless cohort. The researchers conducting the study estimate that the excess cost for treating these homeless individuals was $3.5 million or about $2,000 per person.[5]

How can we help our fellow men, women and children when they need us the most?  One way to do so is to participate in the HUD point-in-time counts.  At the end of January, communities canvass their cities to determine who is homeless in order to receive funds for services and programs to address needs and end homelessness including health services. 

On January 22, 2012 Austin Involved is helping out Ending Community Homelessness Coalition (ECHO) with their Point-In-Time Count in Travis County.  As part of the count, ECHO is providing (with the help of Austin Involved) socks and travel sized toiletries.  And I plan to bring along some candy – which is ever so meaningful to the hungry and those on drugs (do not judge them for being on drugs, they still deserve to eat) or who may be in detox.  Those wanting to join us please RSVP at  Those wanting to help the homeless in their communities – contact one of your local homeless service organizations.

Other ways to help:

  • Donate to local clothing closets those that will give your donations away for free (remember when you have nothing, even a $1 at Goodwill can be too expensive) like – Lisa’s Hope Chest here in Austin.  Donate:
    • Household goods
    • Books
    • Stuffed Animals
    • Computers
    • Toiletries
    • Clothing – not just a t-shirt but socks and underwear too
    • Old phones (these can help the abused call 911 for help)
    • Carry candy in your car or purse and hand it out to those panhandling on the street.  Food helps.
    • Contribute to food drives and pantries
    • Don’t judge – Listen to the stories of those who need our help, you never know who you’ll meet or what you’ll learn.  Smile and wish them a good day.  Let them know they are loved.

“Souls which have fallen to the bottom of all possible misfortune, unhappy men lost in the lowest of those limbos at which no one any longer looks, the reproved of the law, feel the whole weight of this human society, so formidable for him who is without, so frightful for him who is beneath, resting upon their heads” – Victor Hugo, Les Miserables.

Let us recognize and help these souls.  Let us allay their fright.  Let us relieve our neighbors from the burdens that would keep them homeless and in despair.


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