Share Your Story

May 20, 2014

I’ve told a few stories about my medical care as of late, but my voice is one of many.  Scores of patients and their families have experienced medical errors, medication errors, doctor mal/mis-treatment, over treatment, hospital acquired infections and more.  For many of us reparations cannot be made.  But we can make change and try to ensure that patients who come after us receive better care.  To do this, we must share our stories.

It’s not easy to share a story.  These stories are full of sensitive, personal information.  And we wonder – who will listen? will our voices be heard? will our stories be dismissed? will we be judged for speaking out?

I have personally been judged by my stories – including a recent incident where I spoke about a specific provider at a conference as an example of how to encourage patients rather demeaning us when we’re not perfect.  After telling my story I was asked to apologize to the entire conference.  I refused and was told I’ll never be invited back.  They told me I was “unprofessional” for sharing my true story.

I have spoken out and found no one listening.  In years past, I’ve always written to the hospital about errors I experienced while in their care.  Each time I was given a polite form letter reply telling me they notified the appropriate personnel – but nothing changed.  For instance, I told a hospital for years that it’s gluten free menu wasn’t in fact gluten free, and yet when I returned again, they kept the same menus and providers still didn’t know much about celiac disease.

My voice has been dismissed.  Several times I’ve told the hospital and doctors that Levemir is not a substitute for Lantus when administering long acting insulin.  Still the hospital automatically makes the decision to administer a drug that is not appropriate for type 1 diabetics.  Perhaps they think, what could she know? She’s not a doctor or pharmacist.  Patient’s voices are too often dismissed when they are seeking medical care, especially those who know more than their doctors about their own disease.

But the patient voice is becoming stronger and more well respected.  This is in large part due to epatients who are speaking out across the country – invited to conferences to provide a patient prospective, wearing our patient stories in The Walking Gallery, interacting on Twitter, writing books, and not allowing others to ignore our desire to help change our medical system and medical care.

Now there are 2 new tools that will help us share our stories.  The Patient Voice Institute was announced just last week at HX Refractored.  PVI hopes to:

  • Work with patient organizations and individuals to amplify the patient voice in ways that are comprehensive, consistent and true; developed by, with and for people who are patients, family members and consumers.
  • Create connections across patient groups, patients and families, and health care organizations, associations and others to support all sides in developing true partnerships.
  • Provides evidence-based principles that reflect what patients want and need, training and matchmaking for patients and organizations who want to work together, and online promotion programs to encourage patient engagement in the policy direction, operations, and daily interactions of health care.

As they say – “We are a powerful collective” when we can come together to share our stories.

Another tool is part of the Consumer Union’s Safe Patient Project.  I’ve had the pleasure to know Lisa McGiffert, Daniela Nunez, Greg Foster, and Jon Lebkowsky at the Consumer Union for the past 2 years and watched as this project has blossomed.  The idea is to gather, curate, and use stories to effect change through a platform called  And on the Safe Patient Project website, you can start to tell your stories and read those of others who have shared.  In sharing our stories we can start to develop accountability for those places who ignore, dismiss or judge those who speak up.

When I have been ignored and dismissed, and especially when judged I have often thought that perhaps it would have been better to say nothing at all.  But the truth is, I know that if I say nothing, nothing will change.  I feel it is my responsibility to share my story even when the story makes people uncomfortable or means I make myself very vulnerable.  People like Ron Satjia, Regina Holliday, Scott Strange, ePatient Dave, AfternoonNapper, Amy Tenderich and many others have reminded me this week how important and necessary our voices are to making change.  It’s not easy, but by sharing our stories, we can change the world.


Artwork by Donna Downey


It is your very essence.

It is the sound of your own breath.

An idea in your head that you believe in.

It is frightenly powerful.

- Donna Downey

Four HIPAA Violations

April 8, 2014

*Nothing below is meant to be considered as legal advice.

As a lawyer I focus on HIPAA (the Health Insurance Portability and Accountability Act).  I’ve written about HIPAA in cloud based computing for IBM, I’ve trained providers as to how to be compliant, I’ve audited technology companies for compliance, I’ve blogged on Privacy Questions.  Most providers I see do not realize this.  Thus it is somewhat ironic when I encounter a HIPAA violation as a patient.  And recently, I’ve encountered no less than 4 HIPAA violations in the last 4 months. Violations of disclosing hospital records, security of patient portals, text messaging, and marketing.

In short, HIPAA consists in part of the Privacy and Security Rules.  These rules give patients protections as to how their information is used, stored, and disclosed.  These rules were updated last year under the HITECH (Health Information Technology for Economic and Clinical Health) which strengthened these provisions, breach notification laws, and penalties for violation.

Health and Human Services currently lists 931 breaches that have affected 30.6 million people.  But these are mainly before the new HITECH rules came out which are stricter.  Most people hear about HIPAA breaches when a provider has lost an unencrypted computer or flash drive containing patient information.  But violations are not just losing information.  They include the ones I have encountered below.

Hospital Records

In February, I was in the hospital which turned into one of my worst nightmares.  I started writing about the events and how they weren’t meant to be.  But was also not meant to be was an unauthorized disclosure of another patient’s records to me.

Because of all the issues with my care, I requested a copy of my medical records so I could review where things went wrong and what issues still needed to be addressed.  As I got to the bottom of the huge stack, I came across a report and discharge instructions for someone who clearly wasn’t me.  I immediately contacted the hospital, the physician whose name was on the report (a doctor of a practice that contracts with the hospital), and the Office for Civil Rights to file a complaint on behalf of the other patient.

The information wasn’t what I would consider very sensitive, but it was still their information that I should not have been privy to.  The hospital got back to me immediately and I was able to send them back the hard copies of the documents so they could personally shred them.  The hospital said the error likely occurred because they are moving offices and somebody didn’t check the printer to see if something else was also printed at the same time my records were.  No excuse.

The hospital did not think the provider needed to be contacted, saying it was the hospital’s fault – but I think that is not true and felt it my duty to inform the provider as well because ultimately they have a responsibility to their patient regardless.  The physician was glad to know.

I was able to look up this patient by the information on the documents which was not all that detailed.  But all I could think was, what if this were my information???  A lot of my information from that hospital stay was incredibly personal.  What if that got into the hands of someone who would publish that information.  Or what if they used my information to steal my identity?

After all the errors made in my own care, I was appalled by this HIPAA breach.  As of yet, I am waiting to hear the results of the hospital’s and physician’s  internal review and resolution.

Electronic Health Records

Patient portals can be a great tool.  While they are generally not as useful as they could be (and hopefully will be as time goes by), they provide a simple way to communicate with patients, share lab results, and keep track of medical visits.  I always sign up for the patient portal when my doctor provides that option.  And that’s what I did at a new provider that is associated with Seton HealthCare.

At the office, I was given a form explaining the portal and asking me to consent and provide my email.  Then they would send me a username and password to set up an account.  I filled it all out but never received an email.  So I called to follow up.  Turns out they had entered my email in incorrectly and sent the information to another person’s email.

To fix this was no easy feat.  I had to go back and forth between the office and the privacy officer at Seton.  I had to ask them to go back in and review whether anyone had in fact accessed my information by setting up an account.  Then there was an issue with them changing my email in the system.  Then there was an issue of resending the account information for me to set it up.

I was lucky – according to the audit performed by Seton whomever received the initial email did not access my account.  But I honestly still worry.

There are 2 things they could have done to avoid this error.  First, they should have repeated my email back to me immediately to make sure it was readable and they had entered it in their system correctly.  Second, they shouldn’t be emailing the username and password.  I have found that other providers give you a username and password at your visit so you can take it home and login yourself.

The providers are now reevaluating their processes.  Though I think, the vendor who created the patient portal bears some responsibility for a usability issue with their product because it should not have been so hard to remedy, I doubt they will be asked to review this incident.  They are not only selling a product based on a promise of security, they are business associates and held to the same standards as providers under HIPAA and HITECH.

Text Messaging

Text messaging and HIPAA is a complicated and oft debated matter.  Some lawyers will claim it is okay under HIPAA, I disagree.

In January, I scheduled to see an orthopedist and a few days before I went in for my first appointment I received a text message to remind me that I was to come in at 10:10am on 1/13/14 to see Dr. Taylor at his Round Rock location and to reply Y or N to confirm the appointment.  I had to reschedule and got another text message with the date, time, physician and location.  I had never consented to text messages.

As soon as I arrived for that appointment, I asked to talk to the office manager about this violation.  Her defense was (a) “all other practices do it”, and (b) she didn’t think it contained protected health information.  I explained to her that just because other practices do it (including the one below who made a marketing HIPAA violation) does not mean it is not a violation.  And that protected health information includes information that links to the patient regarding appointments and the doctors name.  The doctor told me he had nothing to do with it and it was not his responsibility.  I told him it was, because these are HIS patients being text messaged and he could get in trouble.  He told me if he were to get in trouble, he’d just quit.

I tried to appeal them as to why this might be important.  I wasn’t mad, but I was thinking of my personal and professional experiences who have suffered abuse.  Consider an individual whose abuser breaks their elbow and needed to see a doctor.  What if that abuser saw the text message, started questioning the patient about this visit and abuses the patient further?  This is not a hypothetical situation.  It is real for many who are abused.  Just because it is on the patients phone does not mean that someone else does not have access to that phone.  And text messages are not secure by any means.

It took tweeting the practice over and over and over again to get their attention to address this as I was summarily dismissed by the practice manager and doctor – no one called back.  I finally talked to their lawyer (a colleague in the community) who first asked me to stop tweeting about it and then said that since he had just been to a conference on HIPAA, he felt that HIPAA was okay.  I do not know if they readdressed their policies and procedures – I hope so, for the sake of those who may suffer for their inability to consider the consequences of their actions.


When I opened up my email this morning, I was surprised to find a “newsletter” from an OB/GYN practice where I am no longer a patient (and haven’t been for years).  The newsletter was more of a marketing communication than informational.  It asks me to consider their weight loss program and other services.  They say the “newsletter” will be monthly and will “share with you tips, breakthroughs and insights that we are excited about and wish to extend to the entire RWG family.” I can only wonder which tips, breakthroughs, and insights will include sponsored ads or marketing information in the future?

Under HIPAA, providers must get permission to use protected health information for marketing purposes.  Marketing is defined as “a communication about a product or service that encourages recipients of the communication to purchase or use the product or service.”  Patients must give an explicit consent, not just an ability to opt out.  And patients must be informed of this in the practice’s Notice of Privacy Practices (this practice hasn’t even updated their NOPP since 2012 and do not contain provisions to comply with the HITECH Act rules).

I don’t know if it concerns me more that they are sending a marketing communication without my consent and disclosing my information to a third party for that purpose (the email said to contact a third party about the communication) or that they are using my information when I am no longer their patient.  Either way, I find this unacceptable and filed yet another complaint with the OCR.  I have contacted the practice by phone and tweeted them too.  They responded to my tweets that I can just opt out.


I am truly shocked by these violations – both the number of violations and how easily they occurred.  I know there are a lot of rules under HIPAA for keeping information private and secure, but there aren’t so many that is unmanageable and most have been in place since 2003.   Certainly there are problems with the law (mostly in my view with patients getting access to their own records).  But we must remember that HIPAA is ultimately about establishing trust.  These rules are not in place to provide a serious hassle but to ensure that patients can feel safe in disclosing sensitive information to their providers.  If patients cannot talk to their doctors and feel confident this information will be protected, they will not receive the care they need.

I am troubled knowing how easily my information can be shared – an printout inadvertently sent to another patient, an individual accessing my patient portal, an abuser seeing a text message about my treatment, a practice that sells my information years after I stop seeing them.  I am generally very open and lenient when it comes to my own privacy, but this isn’t just about me – this is about all patients who have rights because this is our information, their health, their lives.


To learn more about HIPAA and HITECH visit the OCR website.

If you have a complaint concerning your or someone elses protected health information, you can file a complaint online, call 1-877-696-6775, or send a letter to the U.S. Department of Health and Human Services Office for Civil Rights, 200 Independence Avenue, S.W., Washington, D.C. 20201.


Why EMTALA Still Matters But Isn’t Enough

March 17, 2014

Last week I talked about my experience in the hospital that was Not Meant to Be.  Among the many issues was an overarching theme of access to healthcare.  As I said before, only by the grace of the passage of EMTALA (the Emergency Medical Treatment and Labor Act) passed in 1986, was I able to get the care I needed.

EMTALA requires Medicare-participating hospitals that offer emergency services to provide medical screening examination and stabilizing treatment for patients with emergency medical conditions regardless of an individual’s ability to pay.

I cannot pay for my medical care.  It is not that I do not wish to pay for my medical care.  I do believe that the time and expertise of the providers who treated me should be compensated.  Their knowledge and skill are valuable and not to be taken for granted.  And if I could pay whether through insurance or self-pay I would do so.

Sadly though, I do not qualify for any health insurance in Texas and thus I do not qualify for any healthcare except through a hospital’s emergency room.  I make $875 a month on Social Security Disability Income which is too much to qualify for Supplemental Security Income.  If you are disabled, you can qualify for SSI if you make less than $721 a month.  In Texas, you are only eligible for Medicaid as an adult if you are eligible for SSI or a pregnant woman.

I do not qualify for coverage under the Affordable Care Act which was never meant to cover those with such low incomes.  The Affordable Care Act was meant to provide insurance options for those above the poverty line yet whose employers don’t provide coverage or were self-employed or unemployed – places where the individual market was too expensive for regular families.  The Affordable Care Act was going to ask states to take responsibility for their poor and would pay 100% of the cost for expanding Medicaid to low income citizens.  But in 2012, the Supreme Court found that the way the law was written was unconstitutionally coercive, leaving it up to the states to voluntarily decide to expand Medicaid for its citizens.  Texas, along with 19 other states, decided not to expand Medicaid.

Thus, EMTALA is still important because there are millions more like me who fall in a coverage gap and still need medical care.

While doctors’ jobs are to treat patients and not necessarily to get mired in payment details, health care providers do have a responsibility to think about costs of care.  But I was surprised to find how very few providers – social workers, nurses, and doctors – realize that there are still many who do not have options for health insurance.  Understanding my situation, which mirrors many of those seeking care in the hospital, is vital to ensure that people get the care they need.

The hospital was going to send me home the same night I entered the emergency room.  They figured they had “stabilized” me and told me they’d give me a prescription for antibiotics (not knowing that I had a multi-drug resistant infection that the antibiotic would not have helped) and a referral to a surgeon.  I had to explain to them as I have written here –  that I don’t have and cannot get insurance.  Therefore, I probably wouldn’t be able to get the prescription and I would never get to see a surgeon.

But EMTALA only goes so far in ensuring one has access to healthcare.  I still had to make the case that I was not in fact “stabilized” given my type 1 diabetes.  People with diabetes are more susceptible to infections and infections can raise blood sugars and high blood sugars make a perfect breeding ground for infections – a perfect symbiosis.  Sending me home with an infection that could result in sepsis on antibiotics that would only establish future antibiotic resistance seemed a poor decision to me.  Though I was able to see a doctor because of EMTALA, I was still not going to get the care I needed unless I fought for it.  And I fought.

Those who come through the emergency room doors of a hospital deserve the very best care.  EMTALA assures us that we will all get some care, that is why it matters.  But it is only the first step to really providing care.  Many patients may not be able to advocate for themselves.  As part of the care we receive, we all deserve the advocacy of the providers who care for us – advocacy to be treated instead of “streeted” as is the normal course of business in a hospital.

If I had insurance, I would have qualified for care outside of a hospital.  If I’d had insurance, I could have seen a primary care physician days before and maybe I wouldn’t have been in such a bad state as when I arrived in the ER.  If I’d had insurance, I could have been referred by that primary care doctor to a surgeon and skipped all the pain caused by and mistakes made by the hospital and hospitalists.  But I don’t have insurance; I only qualify for care through the doors of an emergency room.

#TexasLeftMeOut but thank goodness for EMTALA.  Without this Act  I, and many others, wouldn’t be here.  Almost 3 decades later though, EMTALA isn’t enough.  It’s time do more to ensure healthcare for all both in and out of the hospital, both in emergency and non-emergency situations – because health is a human right.

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.

As I write my story with great personal detail the pages accumulate to nearly 30 pages.  I recount that in my stay from February 17-21, 2014 I had a doctor who nearly sent me home with an infection that perhaps could have left me in sepsis, I was left in my room bleeding because my IV fell out, and another doctor sent me home with a prescription for a medicine I am allergic to (which Target pharmacy filled though they should have known my allergy).  I recount having to return to the ER for readmission on February 22, 2014 and having to beg – nearly screaming – for a phone the hallway to contact a friend and patient advocate – Allison Peacock – to come help me, medications not being administered at the right time or in the right dose – or for that matter the correct medication at all, and providers falsifying records.  I recount since then the errors I’ve found in my medical records and then caught a serious HIPAA violation where the hospital sent me someone else’s records.  All told, I am astounded beyond belief at all that has gone wrong in the past month – quite literally my worst nightmare.  None of it was meant to be.

But beyond my personal story is the story for change that needs to occur.  This was a failure, as I said, at every level.  As I process my experience, I am hoping to find the strength to write on the broader scale about the overarching issues that affected my care and that affect many patients entering the healthcare system.  These include:

  • Access to medical care: Many states chose not to expand Medicaid, thus leaving many low income individuals such as myself uninsured and do not qualify for Obamacare.  Texas was one of those states. I am only qualified to receive care in an emergency situation (by the grace of EMTALA).
  • Hospitalists: I once wrote how I had mixed feelings about hospitalists. My feelings are no longer mixed, I do believe their presence decreases quality of care and increases risks to patients.
  • Continuity and coordination of care: How there  was no continuity or coordination of care between multiple ER doctors, multiple Hospitalists, a surgeon, an anesthesiologist, nurses, specialists, pharmacists, and other providers.
  • Health IT: Why was the Meditech system not properly flagging my allergy to the doctor? Are there usability issues? Was there a rush to implement a system to get money under the Meaningful Use program?
  • Hospital readmissions: Medicare is keeping a close eye on readmission rates. But it’s not just the reason for readmission that matters, it is also the process of readmission. When I returned to the ER, no one in the hospital realized I’d been discharged less than 24 hours before and all of my information was lost.
  • Recognizing and addressing mental health issues in the hospital: Most patients are anxious upon coming into an ER, some of us panic when the care goes so badly – yet providers are not equipped to deal with these issues at any level.
  • Hospital acquired infections: from MRSA to C. diff. to ESBL to even the flu – what protocols are being implemented for patient safety and how effective are they?

Nothing will take away what happened to me.  There is no litigation to file, no cause of action to sue someone.  Apologies, though appreciated, will only amount to so much before they seem empty.  Still, good can come from this if, at every level, responsibility can be taken to make true change.

This was not meant to be. This does not have to be the story of another patient.


Many thanks to the ePatients who have been supporting me throughout: Regina Holliday, Scott Strange, Carly Medosch, and Allison Peacock.

Many more thanks to my mother, a pharmacist in Colorado, who realized the doctor prescribed me a medication I’m allergic to and stopped me from taking it. (The hospital and pharmacy should be thanking her too.)

The Power of Low-Tech in Healthcare

February 9, 2014

Every year, I take time to make some Valentine’s Day cards for kids.  The local radio station gathers cards from the community to take to children who have to be in the hospital on Valentine’s Day.  These kids will miss out on the class parties and the fun of exchanging cards, they need to be reminded they are loved and remembered.

I ask friends not to send me cards, but to send me blank cards so I can send them to the kids.  My grandma used to send me a whole pack of blank cards for the kids.  I take such pleasure in this small gesture.  And every year it reminds me the power of such small acts.  While healthcare is focused right now on high-tech, I maintain that we must not forget the impact of the low-tech.

We know that “laughter is the best medicine.” And a simple smile can meant the world to someone who is sick. In everyday life, a simple smile can reduce our stress and anxiety.  So how can we put into practice the low-tech solutions that could transform healthcare? Here are some examples I’ve experienced:

In September 2012, I had the greatest opportunity to attend Partnerships WITH Patients, organized by Regina Holliday.  As part of the conference, a small group talked with Eli Lilly’s COI group about reinventing the research process to be more patient centered.  We talked about ideas of transforming a sterile room to accommodate an autistic child participating in a study.  We talked about patients having access to their data. In my mind, the greatest thing that I felt drug companies could do – thank participants.  Of all the studies I’ve taken part in, I’ve never been thanked. Not once. Perhaps they couldn’t send me an individual thank you card – though maybe they could.  But what if they put on their website: “Thank you to all the research participants who made our innovations possible.”?

Then a week later, at Stanford’s MedicineX the conference organizers gave me a flower.  I took that flower from California to Texas and kept it for days, reminded how that single gift had an everlasting effect.  The sweet bloom more meaningful than the t-shirt we picked up at registration.

At that conference, I took part in a day of designing at IDEO where we talked about solutions to patients’ healthcare needs.  While many ideas were high tech apps and EHRs, mine was focused on efforts that took no smart phone or computer, big data or venture capital.  My solution was about the connection between physicians and patients – the need to be heard.  The mere act of talking to someone, bonding over stories that may have nothing to do with disease has helped my doctors “get it” or in other words understand me.  And in understanding me, they can perhaps learn how best to treat me.

Doctors too deserve an act of kindness.  A thank you in the least to let them know they “got it” that their care transformed the lives of their patients.  A lovely post on “When patients write to doctors, and what it means” reminds us of the power of the patients words.  I sent this post to a doctor I know and he told me:

I too have kept files of notes.  Recently I received a phone call from a patient, age 82, to thank me on the 20th anniversary of his heart transplant. How Awesome!

These words so important in a system where doctors often feel burdened with new technologies and ever increasing demands, often resulting in burnout which compromises care.  When we send a message of kindness forth, we provide encouragement to our caregivers to continue their great work.

In this age of high-tech healthcare we must remember that our impact cannot be completely measured in the number of users we get or clicks on our webpages.  Rather we must also consider our impact on health in the low-tech ways with which we make others feel heard, loved, remembered, cared for.



February 3, 2014

There are a lot of things you cannot afford on $875 per month.  But according to the State of Texas $875 means you are too rich to be on Medicaid – even if you are disabled and thus by definition need medical care.

Last year, I made one of the hardest decisions I’ve ever had to make – to apply for Social Security Disability.  After more than a year of struggling, I came to the hard realization that I had to accept that my disabilities prohibited me from working – or as the Social Security Administration says, engage in “substantial gainful activity.”

How could this be so everyone, including myself, asks?  I am a lawyer.  I am told I am intelligent and head strong, a leader with ambition and drive.  I have overcome so many obstacles and given all of myself to make an impact in society.  Yet, 4 autoimmune diseases, 13 chronic health conditions, and many setbacks the sobering realization that I could not give of myself anymore forced me to accepting my disabilities and need for assistance.

In December, I was found to be disabled by the SSA and given an allotted monthly allowance of $875 under Social Security Disability Income (SSDI).  At first they also found me eligible for Supplemental Security Income (SSI), but then they realized I make $875 and that is more than the $721 you can get through SSI.  In other words, I am too rich for SSI and thus Medicaid in Texas.

Texas has refused to expand Medicaid for years.  Ironically, in 2009, I worked for State Representative Garnet Coleman who was fighting to expand Medicaid for the adult poor in Texas.  He has continued this fight as have many advocates in Texas.  But Governor Rick Perry along with right wing conservatives refuse to assist those in most need at the expense of around 687,000 women and in a state with the largest uninsured population.  As it stands in Texas, Medicaid is only available for children whose families income and resources lie at 100% of the Federal Poverty Limit (FPL), women who are pregnant, and disabled individuals on SSI.  I am not a child, I am not pregnant, and I do not qualify for SSI.  I am left without healthcare when I need it most.

But let’s put this in the broader picture, because this isn’t just about my ineligibility to receive medical care.  The relegation of a disabled person to $875 per month has ramifications for food stability and affordable housing among other issues impacting health.

Around the country, there is insufficient affordable housing, and in Austin the problem is worsening.  This city is growing by leaps and bounds; new apartments and homes are under construction everywhere.  But they aren’t affordable and the city doesn’t really ask the companies who own them to provide affordable units.  Apartment complexes that do have units sectioned for low income individuals and families having long waiting lists, the Housing Authority of the City of Austin has closed its wait list for single bedroom apartments, there is no Section 8 housing.  In other words, there is nowhere to go.

The average rent in Austin climbed 5.7% last year to almost $1,020 for a one bedroom apartment.  My rent – $875 per month.  And though I qualify for some rental assistance through Travis County Health and Human Services grants or other programs – Greystar owned City View Apartments will not accept such rental assistance (they should be ashamed of themselves).  The threat of losing my home is real every month.  And as research has shown, stable, affordable housing has an effect on individuals with chronic illnesses.

Food stability remains another challenge.  I have been on food stamps for a few years now (as I accidentally revealed in this interview).  At the most, I’ve received $200 (the upper limit in Texas for a single person) and at the least a measly $15.  For someone with Celiac Disease who has to eat a gluten free diet, I assure you this money does not last until the end of the month.  Gluten free foods while a choice for many are an imperative for me and they are expensive.

My fridge when the food stamps run out

My fridge when the food stamps run out

Interestingly, this month Health Affairs published a study on the consequences of food budgets not lasting until the end of the month revealing that hospital admissions for hypoglycemia (severe low blood sugars) were more common in low-income population at the end of the month.  In fact, admissions increased 27 percent in the last week of the month – the same time when food stamps have all been spent.  For a type 1 diabetic such as myself, this hits home. Being able to eat healthy (gluten free) foods can have major consequences for my blood sugars.  (The blog Health Populi has a great post on this.)

Food prices are increasing. Just today at the store I saw that a gallon of milk (not the organic or even the store brand but the cheapest brand) went from $2.98 to $3.03.  While 5 cents might not matter to most, I spend time cutting coupons to save even 20 cents because every cent matters.  In fact, I’ve been known to count pennies at the checkout line to purchase a few items at the end of the month to the great annoyance of those lined up behind me.

And while we talk about the importance of food stamps (and why it matters that Congress not cut funding), we forget what food stamps don’t buy. As Eminem rapped “these g**d**m food stamps don’t buy diapers.” He’s right, food stamps don’t buy toilet paper or shampoo, they don’t by allergy medication or laundry detergent, they don’t buy tampons or hand soap, they don’t buy dish soap or toothpaste.  Honestly, I’ve almost been thankful I’ve been in the hospital at times because I eat better there and I can go home with a tube of toothpaste and a small bottle of shampoo/body wash (yes it doubles as both in the hospital). One’s hygiene is at stake when you only get $875 per month.

The line for a free flu shot

The line for a free flu shot

I do however qualify for many of the prescription assistance programs offered by various pharmaceutical companies.  I found each program through which links to each drug and each company’s application.  GlaxoSmithKline, Eli Lilly, Sanofi Aventis, AstraZeneca (though they tried to deny me – see my open letter to them), Merck and others – each one, just like each assistance program from the County, State or Federal Government – with its own requirements, its own documentation.  Each one taking patient and diligence to navigate.  Still there are no programs to cover the syringes I need to take insulin.  There aren’t programs to pay for the $80 inhaler I need, antibiotics previously prescribed, or a flu shot.  Another reminder that there are huge gaps in our system for providing individuals healthcare, for ensuring a right to health.

I went to law school to find a career making a difference in this world.  I thought it would lead to great opportunities for me to advocate through law.  I thought I would find myself financially stable and with insurance.  I did not think that I would find myself here – advocating for myself and learning firsthand what I started off wanting to change for others.

When one falls – leaves behind what they once expected – a new world is opened, a world unseen to most.  Every day becomes a fight to breath, to seek resources merely to survive.  I am fortunate in the respect that my education allowed me to research resources and to navigate the complexities of convoluted systems.  I am lucky to have had help from those who could give at times I most needed help.

Most aren’t so lucky.  Sadly, many cannot advocate for themselves and those meant to support the needy including social workers, case managers, doctors, and nurses often do not know how to help. They don’t realize the barriers many face, or even which resources might be available.  When I met with these people, I often ended up educating them on resources they’d never heard of (such as NeedyMeds – which almost none know about).  Particularly in the medical profession, I found it my responsibility to open up their eyes to the realities of poverty.

Who then will help the millions more like me?  Those who are disabled or who have faced their own challenges rendering them without through no fault of their own?  Perhaps they were thrown into bankruptcy because of medical bills or lost a job in this difficult economy?  Perhaps they lost their home to fire started by a spark in a draught caused by climate change? Perhaps it is the result of what Paul Farmer and others term “structural violence” or “the historically given (and often economically driven) processes and forces [that] conspire to constrain individual agency”? The reasons are endless but all result in inequality, struggle and pain for those affected who are left with little help and often no voice.

I do blame myself even when others assure me that this is not my fault.  Our society (primarily conservatives) demands that we take responsibility for our circumstances – and I am honestly not proud of mine. I often feel that I have lost myself along the way and found that with $875 one cannot afford much dignity.

But if I were to be hopeful, which I generally am not, I might see that this time on disability could merely be a point of rest, to allow myself time to regain my strength and the resiliency it takes to face the challenges of my everyday life and of the future.  It could be living through these experiences will give me a unique insight in how to bring about the change most desperately needed to realize health as a human right for all.  In the meantime, I am lucky that I am able to write, tweet, and sometimes speak about my experiences.  And even if I cannot engage as I once thought I’d be able to, if I can continue to advocate in any small way to further the ideal of health as a human right, I will do so.  And I will start by offering you, with great vulnerability, my story.


January 4, 2014

I just finished reading “Soul Made Flesh: The Discovery of the Brain – and How it Changed the World” by Carl Zimmer.  I do think that the author does a fine job in presenting the historical context and accounting for the political and philosophical backdrop. However, I think he ascribes too much credit to Thomas Willis in medical revolution.  I am not convinced of his great role in medical advancement though I am intrigued by how he contributed to science.

What disappoints me though in books such as these is generally the last chapter. Somehow, the way many non-fiction books on medicine, medical history, medical theory are summed up do not either bring closure to the subject at hand (which perhaps they shouldn’t as life continues) nor do they inspire.  I’m disappointed in how they choose to summarize their work.

In a way this disappointment mirrors my own disappointment in the outcome (thus far) of my life.  I cannot accept the answers given at the end of any analysis not just in these manuscripts but of myself. I need something unseen, radical, different that carries forth an idea.

The last line in my article for IBM on the FDA regulation of medical mobile devices perhaps gives insight into a conclusion I feel more satisfying.  I wrote:   “Mobile app developers who follow the FDA Draft Guidance will already be a step ahead of competitors who ignore it — and can save time, money, and ultimately lives.” The editor wanted to delete the last notion of why this article is important at all, which is to call attention to the fact that regulations are not made for the sake of making regulation and though the hassles of compliance are frustrating and impose obstacles, they have a purpose.  Because the article was geared toward developers and business I inserted time and money.  But my notes to the editor simply stated: “I really want to keep that last part about saving lives in.”  I wanted to keep in the reason all of this matters and impress upon the readers the reason why they are doing what they are doing.  The text I wrote in itself is not truly important other than a blueprint to follow regulation, to really encourage innovation I needed those last words – a summation not normally accepted as an ending in this genre of writing.  But an ending I hope that does not leave one unfulfilled as do many of these I read.

Case in point. I’ve always been disappointed in my undergraduate honours thesis for the way in which ended.  I did not find the research in itself particularly important.  It was a project I was never in love with but completed at the behest of my advisor who did not encourage the path I wanted to take in exploring empathy.  Regardless, I finished my thesis, I analyzed the data and gave a conclusion and maybe a suggestion for its implications.  It’s as if nothing more need to be said about how people believe emotions, cognitions and behaviours interact.  The conclusion remains unsatisfactory to me because it would never inspire anyone to continue the research to follow why these beliefs are important and how they impact our lives.  No, as in these books, the final chapter ruins the entire work that precedes it because nothing consequential arises.  An idea is presented at the beginning, the substance poured throughout pages of insight and careful research, only to be concluded with an end without meaning.

I feel my medical treatment is much the same.  I present at the beginning a complicated case, I develop the means by which to address this case through scientific research, experience, intuition, introspection, and ultimately convey that as best I can through writing (as I fear my speech is never fully formed as to be persuasive, coherent, or comprehensive).  I study myself as an anthropologist. Yet the conclusions I come to are not conclusive and I reach out to others to try to help me find answers I am seeking.  Yet the conclusions of others, in particular medical providers, are not based on the work I’ve placed before them but on answers handed to them so that the chapter they are writing for me is final instead of inspiring or innovative.  I know this is the case for too many.

I believe that all works of life and literature should not be final in themselves but continue to stoke the fire within us for change.  The 296 pages I just read conclude with a brief history of the scientific achievements that built upon Willis’s work, but I feel as though they frustratingly end with a fact instead of an idea.  How else can we attempt to progress, develop, improve, evolve, grow but through ideas? How else can our histories etch upon this world their importance for our future?


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