Eric De La Cruz: The Heart of Healthcare Reform

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In Memoriam:  Eric De La Cruz,  July 4th, 2009, Rest In Peace

Eric De La Cruz raised the bar on American courage.  His family continues to shine a light on love.  Due to strength of will, he and his family would overcome obstacles few could navigate, lead an international community of thousands, and ignite others admiration and heroic passions.

The need was singular:  a heart transplant to save Eric’s life.

Please get the word out about my brothers plight.  He needs a heart transplant.  Healthcare red tape.  Please help save #Eric

Their story is profoundly American.  Only in the United States of 2009 could we develop the rapid technology needed for the De La Cruz’s triumphant and inspirational campaign, but also the healthcare system leading to their heartbreak.

Eric’s sister Veronica De La Cruz built a humanitarian Twitter community for Eric’s heart with some of the strongest bonds I have seen in a live or online campaign.  Supporters experienced in real time each blockade the De La Cruz family faced.  Despite the crisis, her continual dignity and love for her brother reminded many how to love. Eric pushed on.

It began when Eric was 22 years old, in school part time and working entry level.  These positions rarely offered health insurance or pay that can cover premiums.   At the time, he was one of the 30% of our millenial generation without insurance.  He was healthy, played hockey. He then grew fatigued and was diagnosed with severe dilated cardiomyopathy.

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Eric’s condition worsened in the years after his diagnosis, leading to the eventual recommendation of a heart transplant. Every day Eric survived was a victory to him and the family since then.

Nevada does not have a heart transplant center. Prior to healthcare reform, this unleashed a black hole.  With a pre-existing condition, Eric’s only insurance option had been Medicaid.  Medicaid is not federally controlled or portable across state lines due to state’s self-determination.  The transplant was not covered.

Pleas for Eric’s life were Tweeted from celebrities such as Demi Moore and P. Ditty.  As the healthcare red tape reached nightmare proportions, the community grew stronger and faster. Beautiful friendships were forged.  Hundreds of photos and cards were sent to Eric.  Together supporters created videos, Facebook groups, and Flickr streams. Touched by Eric, supporters created the “No More Red Tape” campaign and petition.

Eric had applied and was rejected twice for Social Security Disability status for coverage under federal Medicare, which represented his best hope of coverage that would permit his transfer to an out-of-state transplant center. And, worse yet, his next appeal was set a year in the future, time he certainly did not have.

My friends, … Senator Reid needs to know that there should be a change in our flawed health care system. We are praying that in this instance Nevada and California will work together so that Eric can get on the transplant list.

New champions were inspired whose interventions where heroic if not legendary.  Trent Reznor of the band Nine Inch Nails is now one of our great humanitarians for his emergency fundraising work for Eric.  He came to the rescue when Eric finally received Medicare, yet Medicare was deemed insufficient by their transplant center of choice.  Hospitals can inflate any price and turn away any private or public plan they feel will not pay the entirety.

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Eric’s situation shines a bright light on a broken healthcare system, and his particular set of problems are being addressed on the political front, aiming for reform in addition to the need for immediate financial help to keep him alive TODAY. I think we can help with the latter. ~ Trent Reznor

The De La Cruz family was left to raise the remaining cost of the heart transplant.  Trent launched a feat of brilliant fund raising ingenuity that raised close to $500,000 in two days and over to $900,000 in a few weeks.  His fans were moved by Eric’s story in monumental form. Janes Addiction and Tony Hawk came on board.  Eric was transported and admitted to a hospital in Los Angeles.  NIN’s gracious fanbase went above and beyond and joined Eric’s campaign with passion. The top donors received VIP NIN pre-concert access to the show of their choice.  The tour sold out of VIP packages. These are at one:

Hanging in there, Eric wrote a thank you note to Trent.  It encapsulates what we all believe about Trent and Eric, “Words can not describe..”

Despite devastating complications leading to VAD surgery to keep him alive, Eric remained mentally strong and Veronica remained positive:

He even says he wants to try to play Scategories! HUGE improvement. He hasn’t had energy so I am happy to hear.

Their love was a light:

With one miracle after another. Thanks to everyone who has stood by our side and supported us. Its been a lovefest on the web. We are grateful.

July 5th, 2009: A day of shock that will not be forgotten by thousands.  Veronica posted her goodbye to Eric after he died on our nation’s birthday. He did not survive recovery from the VAD surgery, which was his only hope to stay alive.  The De La Cruz family’s pain was felt and candles were lit for them around the world.

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What is most uniquely American about Eric’s story is that in other developed countries, more than Eric’s courageous memory would be alive.  Prior to healthcare reform, the true heroes in the battle for healthcare were the 18,000 uninsured who died per year. They fought hardest, just to live.  The De La Cruz family continues to fight so other families do not suffer as they did.

According to a Harvard think tank other countries spend half of what we do on healthcare and have higher survival rates. Any single part of the Affordable Care Act would have saved Eric’s life:  Premium costs attainable to entry level workers, an accessible federal plan, or the elimination of pre-existing exclusions.

There are two ways to grasp this.  Statistics:

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Or by opening your heart:

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Before the ACA, one third of our younger generation was uninsured, a circumstance similar to Eric’s could strike down many young hopefuls in college.

During Eric’s life, Veronica lovingly called Eric’s supporters “Eric’s Twitter Army.”   After witnessing first hand what the US healthcare system did to the De La Cruz family,  Eric’s Twitter Army is there to fight for healthcare in his name.  They are there so a healthcare failure of this magnitude will not happen to another family.  They believe in his memory and life.

Join us.  Follow @VeronicaDLCruz on Twitter.

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The Tweet Heard Around The World #iranelection

This is what we want:12665468#iranelection

Before June 13th, 2009 we viewed the world outside the west through a media window that we did not know was there. That window has now been broken forever. The protesters in Iran are fighting an under-reported attack on their constitution and human rights, and at the same time garnering international support while turning media on its head.  In the course of a weekend, their courage swept and inspired the internet. They also showed us how distant traditional western media has become to global experience.

The situation in Iran is now CRITICAL – the nation is heartbroken -suppression is iminent – #Iranelection

For those fortunate to have followed the protests via social media, the story is truly a masterpiece of the movement’s will to have the truth be known. They want their constitutional right to a truthful election. The brutality and censorship they face has not extinguished their hopes, it is what turned them to the streets and the internet.  Despite their latest estimate of over 1,000 arrests, 28 deaths, and hospitals running out of blood, they have yet to stop standing up to their regime.

Much of what occured in the first 48 hours after the election results was missed by media outlets. But via social media and Twitter, we knew the gravity of each situation before it happened.  They debated with each other whether to go to the march with Mousavi when national television announced to the country that it will be met with gunfire. That did not stop over 10,000 Iranian protesters.

IRG threaten to open fire at people if they try to participate in Mousavi’s rally.  State TV right now: rally is illegal and Police will use iron fist against law breakers.

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The throng at the rally in the picture above is telling.  Aside from risking gunfire, a different strategy was used to stop organised protests the night before. Mousavi’s core support are university students, so the Iranian government launched an attack and round of arrests in universities.  There, Twitter was also used as a SOS for injuries, reporting how others could avoid harm, and reporting who died.

We have now some students with urgent need of medical attention.  I’m calling out to all ppl who can come here don’t leave us.  All university’s own security and personell have been evacuated by the police.

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The University raids were obvious messages of state force. Their estimated aftermath is 100 arrests, 15 badly wounded, and 5 dead. When Basij and police lined the only entrance of one university with police vans, other students drove their cars in to block them. The Basij ended this with smashed car windows, tear gas and any students that fought the raid were met with metal chains. The students were then imprisoned in the buildings overnight. Everything was destroyed. When one badly injured student was allowed to leave for the hospital, he was arrested from his hospital bed.

Tired & beaten. we couldn’t break through their wall, they were too many & we were no match for an entire army of special forces.

After the rally the students came back to more Basij at the university. Names of the dead were read on Twitter:

There is no need to hide their names anymore Mobina Ehtrami, Fateme Borati, Kasra Sharafi, Kambiz Shoaee & Mohsen Imani; all killed by ansar

During the 24 hours after the election results were announced and before the university arrests, there were two media realities in the West. On social media, you had the heartbreaking flood of YouTube videos with police brutality and violent arrests, stunning images of courage and detailed testimonies on Twitter and blogs. If you went by television in the US, all you knew is that their were protests in Iran over an election. Time magizine online did cover it with an excellent article.

Police Brutality Clips from June 13th from YouTube:

 

The day after the election, this stunning photograph emerged of an Iranian woman showing the courage of a people standing up for their rights. It was one of the most talked about items on FriendFeed.com on June 13th.  US television had yet to report on the crackdown in Iran.

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Twitter users volunteered their servers as proxies to keep Iranians online while SMS, cellphone, landline and social media sites were blocked or cut in Iran.  A much larger base of Twitter users changed their cities to Tehran and added green icons. Combined, this very broad network of global volunteers hoped the state regime would have to play online “whack-a-mole” versus more traditional and sudden censorship.  It did not go unnoticed, and someone was attacked in the US.

Government now attacking people who provided proxy for us, I don’t know exactly how, but it’s confirmed. To all friends who are providing proxy / tunnel / vpn!  Please be careful!  Do not provide them in public & to all who seems to be from Iran.

Social media users in Iran documented events and uploaded them to YouTube, blogs and Flickr like award winning reporters. Through the real-time and lightweight structure of Twitter, the videos and pictures were woven together as events occurred. The testimonies and reporting occured even though some are running for their lives.

Thanks to someone (probably gov) we’re are now also spies of Israel and to be shot on sight

The stories spreading from Iranian to Iranian through word of mouth are what matter, as this is what they are living right now. As much as Iranian state media wants to spew propaganda, or our national media wants to create their own footage, it is the protesters stories and belief in freedom that moves their fellow countrymen. It moves us.

 

And the movement’s support comforts them:

It is a miracle to have 25,197 people around the world supporting us! Thank you all out there.

This post was published before the harsher severity of the crackdown escalated. The Green Briefs were then organized and issued each day. Readers may begin here with Brief #1. These briefs are based on witnesses in Iran on Twitter. They report a much higher injury, death toll and number of arrests than Western media or Iran state media.

HEAL Africa: Woman’s Voices in the Congo

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Although the Congolese war has been described as the bloodiest since World War II, the holistic hospital HEAL Africa is able to reach victims and remain stable due to its strong local ties.  Manuevering under the radar inside the territory, victims of what has been called “the Rape Capital of the World” come to the hospital for trama surgury, healing and a renewed spirit.

The film LUMO was created by the Goma Film Project to highlight one womans journey through the healing process at the HEAL Africa hospital in the Congo. The films trailer (please watch below) gives us a sense of the strong purpose of HEAL Africa.  Lumo received numerous awards including the Human Rights Watch Official Selection and has been featured on CNN, the New York Times, and NPR.

The Goma Film Project summarizes the critical and life changing purpose of HEAL Africa to Congolese women:

“The agonies of war torn Africa are deeply etched in the bodies of women. In eastern Congo, vying militias, armies and bandits use rape as a weapon of terror.

Recently engaged to a young man from her village, 20 year-old Lumo Sinai couldn’t wait to have children and start a family. But when she crossed paths with marauding soldiers who brutally attacked her, she was left with a fistula— a condition that has rendered her incontinent and threatens her ability to give birth in the future. Rejected by her fiancé and cast aside by her family, Lumo found her way to the one place that may save her: a hospital for rape survivors set on the border with Rwanda. HEAL Africa.

Buoyed by the love of the hospital staff, and a formidable team of wise women known to all as “the Mamas,” Lumo and her friends keep the hope of one day resuming their former lives, thanks to an operation that can restore them fully to health. A feisty young woman with a red comb perpetually jutting from her hair, Lumo faces the challenge of recovery with remarkable courage and sass. As she and her friends recover from surgery, they pass the days by gossiping and sharing their dreams of one day finding love.”

The E-Advocate Network interviewed Harper McConnell, the Director of Development with HEAL Africa.  I am deeply moved and inspired by her knowledge and 24-7 dedication to the health of rural Congo and ending the rape epidemic.

E-Advocate Network: HEAL Africa works towards the vision of a holistic medical health in the rural regions of the DR Congo. How are your volunteers and staff on the ground in the Congo working to advance your vision?

HEAL Africa: HEAL Africa has sat at the epicenter of the genocide and war since HEAL began as a hospital in Goma in 1994, founded by a Congolese surgeon, Dr. Jo Lusi and his wife Lyn. Health problems are often the symptom of greater societal ills, so we work outside of the hospital walls.

We are one of the few aid organizations that can cross all rebel territory lines to deliver medicines, train rural nurses, and educate communities through public health seminars. We adamantly believe we must address the root causes provoking poor health.

E-Advocate Network: What approach has HEAL Africa utilized to equip conflict-ridden communities with health strategies?

HEAL Africa: The utter lack of infrastructure makes supplies and services incredibly difficult to deliver. As most people cannot come to the HEAL Africa hospital in Goma, we collaborate with over 56 other rural health centers and larger international health organizations, through training health workers and providing supplies to set up relief action plans for major outbreaks and health crises.

The rural health centers are supplied with training, equipment and medication including malaria treatment, HIV prevention and orthopedic operations and HIV transmission at birth through HEAL Africa.

E-Advocate Network: What are the key health issues that HEAL Africa is currently addressing?

HEAL Africa: At the hospital in Goma, HEAL Africa specializes in fistula repair surgery for women who have developed the condition from either complications during pregnancy and labor or from brutal rape. HEAL Africa addresses orthopedic issue as well. The hospital performs over 1000 operations per year.

In the rural areas HEAL Africa does outreach training and surgery where the surgeons at the hospital in Goma take a several week trip to a remote area to operate and train the nurses and doctors.

The HIV AIDS clinic at the hospital monitors 500 HIV positive children and administers anti-retrovirals. In the rural areas, the Prevention of Mother to Child Transmission program administers medicine to women who are HIV positive when they are giving birth to reduce the chance of transmission.

E-Advocate Network: How is HEAL Africa affected by the current upsurge in military action in the Congo?

HEAL Africa: Due to the crisis, HEAL Africa prepared for a cholera outbreak and has been administering cholera treatment in refugee camps and surrounding areas.

The conflict greatly affects HEAL Africa’s development programs in the rural areas. HEAL focuses on development rather than relief, but in times of crisis the focus must be shifted towards relief. This can be discouraging as many of the staff members have seen their hard work torn away in a matter of days, but at the same time they are able to assist the communities in an efficient and relevant manner as they have been connected with them long before the recent upsurge in fighting.

E-Advocate Network: How can we support your vision?

HEAL Africa: You can raise funds and we have two rewarding ways to do this. The escalating conflict has placed a large financial strain our organization as the majority of the medical work is done for free or below cost. You can also just donate on our website.

With your friends, or community organization you can host a party and watch the documentary “Lumo”. This award-winning and engaging documentary follows a women on her journey to the HEAL Africa hospital. Procedes of your purchase of the DVD from the LUMO website will go to us when you use the code HEAL0808 We can equip you with informative materials to teach others about us.

You can also order beautiful Healing Arts products. The Healing Arts program at HEAL Africa teaches patients at the hospital how to sew, read, write, and weave. Healing Arts also collaborates with widows and disabilities groups to produce products that are sold locally and internationally. All participants are paid a good, fair wage, which allows them to support their families. You can go to the Healing Arts website to order.

Learn more about HEAL Africa: HEAL Africa’s Act center has more information and ways to get involved. Readers can also connect with Heal Africa on their Facebook page.

Be the Sea Change

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The breathtaking image above shows the majesty of an ocean as it should be.  Through large scale action it could remain this healthy.  But, it will take an overhaul in how we perceive the water that makes up 71% of our planet and creatures that live in it.

Over the summer, I interviewed the Wild Dolphin Foundation, as well as participated in their adopt a dolphin program.  It was an interview that opened my eyes.  I live in Colorado, as land-locked as they come, having no idea that what I poured down my drain or let drip from my car was partly responsible for killing off the species of dolphin I adopted.

The $20.00 I donated to the Wild Dolphin Foundation may have undone some of the damage I had done over my lifespan.  The Wild Dolphin Foundation works hard to get this through our heads.  What we do on land is a big part of the conservation problem- our consumerism and waste.

Another issue is captivity.  It is through this lense that we get a feel for the larger issues of ignorance and disrespect.

A few weeks ago, I began to interview Shelby Proie, a dedicated ocean activist who recently appeared on CNN advocating for the orca Lolita, housed in an illegal sized tank at the Seaquarium in Miami.  Shelby volunteers for numerous ocean conservation nonprofits and is a wealth of knowledge on marine mammal conservation.  She currently advocates for the Orca Network, who tracks the remaining orcas.

I began researching for her CNN interview.  I found million dollar requests for Lolita’s release, major movie star involvement, awareness concerts, major media articles, and years of protests.  I saw pictures of the illegal size of her tank – it is a ratio that equals a human  body trapped inside a closet for forty years.  An orca’s body is created to swim up to a hundred miles a day on average in the wild in a three dimensional environment. The illegal sized tank is a torturous space for an orca. It is harmful to Lolita and dangerous to those who train her. When born in the wild, orcas are nearly harmless to humans.

Over 40 years of her captivity and there has not even been a fine.  The following is from the US Animal Welfare Act, which covers animals in captivity, transported animals, and domesticated animals.  The painful word below is ‘annual.’

“To ensure that all licensed and registered facilities continue to comply with the Act, APHIS inspectors make unannounced inspections at least once annually. If an inspection reveals deficiencies in meeting the AWA standards and regulations, the inspector instructs the facility to correct the problems within a given timeframe. If deficiencies remain uncorrected at the unannounced followup inspection, APHIS documents the facility’s deficiencies and considers possible legal enforcement.”

The Seaquaruim and Lolita seem to have missed their annual inspection for forty years under the Animal Welfare Act.  Ironically, there is a link to report an incidence such as Lolita right on the same page where I read the Act so they can be inspected.  As we know, Jonny Depp and a million dollars can not make that button work.

We have an ocean that is in poor health due to centuries of neglect and disrespect for its creatures.  We need to completely turn the tide.  We are down to the less then 10 percent of the ocean’s population of mammals, and in my eyes that means the clock is ticking.

The Wild Dolphin Foundation, Shelby Proie and I got together and came up with an Idea for America to bring to the Obama administration.

The answer is to do more and ask for more than just taking part in any one campaign of plastic bags or stopping drainage.  We need to take part in a campaign that covers ocean conservation as a whole.  We need a government body that actually implements its ocean and marine animal policies, responds to ocean related nonprofits and takes action on issues.

How many aspects of ocean health will have to be down to be depleted before we campaign for real, permanent change?  How many ocean creatures will struggle like Lolita before we see our country’s failure to respect ocean life?

Ocean and ocean species conservation needs to come to the forefront instead of remaining buried within the current government system. Our government bodies that can take action for ocean protection, management and conservation are saddled with many other concerns.

The hierarchy begins with the US Department of Commerce, under which is the top-notch National Oceanic and Atmospheric Administration (NOAA).  NOAA’s mission:  “NOAA is an agency that enriches life through science. Our reach goes from the surface of the sun to the depths of the ocean floor as we work to keep citizens informed of the changing environment around them.”

Under NOAA, the body whose primary concern is ocean related matters is the National Ocean Service.  This quality scientific agency is greatly concerned with ocean conservation, but again has increasing responsibilities, one of which is to maintain the ocean’s productivity and “grow our nation”s coastal economy.”  The ocean is responsible for 60% of our gross national product already with overfishing as one of ocean conservation’s primary concerns.  The National Ocean Service has plenty to bear.

What needs to happen is the creation of a government body whose primary reponsibility is advocacy for ocean conservation and ocean species in captivity.  With 71% of our planet dying, it will take more than a compromised focus of a service, within an administration, within a department.  It will take an idependent commission with a clear focus and we can create it.

We can be the change.

First, I will take you to Change.org.  I am a firm believer that everyone who plans on creating change should have a free account there.  Secondly, there is currently a campaign created by Change.org called Ideas for America. Vote for the ocean. BE THE CHANGE. VOTE FOR THE OCEAN.

2011 update:  Moving toward success! This 2008 call for an independent ocean commission was part of a broad based chorus of voices reaching back to 2000. I received an email in 2009 from the Wild Dolphin Foundation that the Obama Administration had invited ocean conservation related nonprofits to make recommendations to a new inter-agency task force for ocean stewardship and policy. The result is the dual Principal- and Deputy- level National Ocean Council and National Ocean Policy. Readers can learn more about their work on the website of the National Ocean Council and the framework behind it in this PDF. I will report back on any outcomes related to the original call to action when  information is available.

2013 update: Blackfish.  The issue of orca captivity came to the forefront with the release of the documentary Blackfish. The film, directed by Gabriela Cowperthwaite, places a heavy emphasis on the inherent wild nature of marine mammals. In response to the film the Animal Welfare act is updated to include marine cetacean captivity.