We produced this video for Diabetes Mine, an online community for people with diabetes. They wanted to show it at the annual American Diabetes Association Scientific Sessions Conference and then release it online.

The idea was to show that we stand at the dawn of a new era of patient empowerment that applies “consumerism” to health and medical care in ways never seen before.

The theme was Diabetes Reloaded, which stands for redefining not only the role of technology in managing chronic diseases, but also for the newfound self-confidence and ambitions of 21st century people living with health conditions. What’s special about this new web-enabled world of healthcare? It’s proactive, technology-based, empowered, revolutionary, against all odds, and – if needed – outside the establishment.

About this Video

Reporting AIDS is a recurring series that focuses on the people, policies and issues facing the global community. Shows appear twice a month with in-depth interviews conducted by host John Mikytuck.

Past episodes can be viewed here.

Documentary filmmaker Jay Corcoran captures the impact of AIDS on peoples lives. Corcoran’s three films; Life and Death on the A-List, Undetectable, and most recently, Rock Bottom, track the evolution of the AIDS epidemic since 1993. Corcoran’s films expose the struggles of people living with the disease and shine light on the underlying problems that continue to spread it. John Mikytuck talks with Jay Corcoran about AIDS on film.

• All patients are at risk for receiving poor health care, no matter where they live; why, where and from whom they seek care; or what their race, gender, or financial status is[1]
• Healthcare is increasingly more expensive and less accessible[2], with more than 46 million uninsured in the U.S. from every age group and at every income level, 8 out of 10 being in working families[3]
• There is a knowledge void - the healthcare community is drowning in oceans of information, yet doesn’t know the best ways to prevent health problems and treat them cost-effectively.[4]

In this next series of posts, I will offer an answer to this daunting question: What can be done to drive continuous improvements in care safety, quality and efficiency, which would enable people to remain healthy longer, manage chronic conditions more effectively, and receive the best possible healthcare delivered in the safest and most economical way?

My answer focuses on the creation, use and evolution of valid health knowledge. Why? Because, I contend, the quality of care would improve dramatically and costs would drop precipitously if everyone:

• Knew the best ways to prevent illness, to avoid complications of chronic diseases, and to treat health problems in the most effective and efficient manner
• Used this knowledge to promote wellness, self-management, and recovery
• Participated in evolving this knowledge to make it ever-more useful and effective.

So, what would it take to foster widespread knowledge creation, use and evolution in our healthcare system?

Well, since knowledge emerges from information,[5] it is essential that both consumers/patients and providers have access to useful health information, including patient health data, care outcomes, and evidence-based guidelines. Furthermore, the information must be presented in a way tailored to each persons needs and be made available whenever it’s needed. Unfortunately, this is much easier said than done for many reasons.

One daunting core problem involves exchanging patient data between disparate electronic record systems. After all, knowledge can’t grow and care can’t improve unless patients share their health information with their providers, providers share patient information with each other, and researchers have access to this information to develop evidence-based guidelines. And this must be done in a convenient and secure manner that protects patient privacy.

With cost estimates for developing a national health record system enabling patient data exchange being between $100-276 billion,[6] the question is, why must it be so expensive? Aren’t there any easy, inexpensive ways to do it? Let’s examine these questions.

One way to reduce health information exchange costs is by developing and using standards that promote interoperability between disparate health record systems.

Standards are models, principles, policies, or rules that provide an agreed-upon framework for doing and understanding things. When it comes to health information exchange and knowledge growth, at least two types of standards come into play: data and technology standards. These standards describe how health data are categorized and defined, how health outcomes and healthcare performance are measured, how healthcare knowledge is used, and how different software systems communicate with each other when exchanging data.

In my next post, I examine this double-edged sword of standards, pointing out their benefits and the thorny problems they create.

References:

[1] The First National Report Card on Quality of Health Care in America by RAND Corp (2006)

[2] Health Care Coverage in America: Understanding the Issues and Proposed Solutions by The Alliance for Health Reform (March 2007)

[3] The Current Situation - WellnessWiki

[4] The Knowledge Void - WellnessWiki

[5] DIKUW Blog

[6] Linking Providers Via Health Information Networks by The Alliance for Health Reform (2006) and
Dying for Data by R.N. Charette (2006)

Steve Beller, PhD

The Campaign to End Aids (C2EA) was created to ignite a political conversation about ending the AIDS epidemic. In response to the lack of attention on HIV/AIDS issues during the 2004 Presidential election, a group of concerned HIV/AIDS leaders formed C2EA. Their idea was to use traditional grass roots organizing by people impacted by the HIV to get the issue of ending AIDS on political and media radars. C2EA is re-igniting the kind of activism that proved effective fighting AIDS in the late 1980’s. Larry Bryant, National Field Organizer, and Charles King, Housing Works President, join Reporting AIDS to discuss the Campaign to End AIDS.

ZIOPHARM Oncology, Inc. (NASDAQ: ZIOP) is a biopharmaceutical company engaged in the development and commercialization of a diverse, risk-sensitive portfolio of in-licensed cancer drugs to address unmet medical needs. The company’s focused strategy is to apply new insights from molecular biology to already validated cancer-fighting medications with the objective of developing safer and more effective oncology treatments.

ZIOPHARM has a portfolio of three compounds in development with a combined North American market potential of over $2 billion. The three compounds are: ZIO-101 (darinaparsin), a new class of organic arsenic (in Phase II for treatment of advanced myeloma, leukemias, and liver cancer); ZIO-201
(isophosphoramide mustard or IPM), a proprietary metabolite derivative of ifosfamide (in Phase II for treatment of sarcoma); and ZIO-301 (indibulin), a novel anti-cancer agent called a tubulin inhibitor that prevents cancer cells from dividing (in Phase I).

About this Video

Reporting AIDS focuses on the people, policies and issues facing the global community. Shows appear twice a month with in-depth interviews conducted by host John Mikytuck.

Past episodes can be viewed here.

The Food and Drug Administration announced the approval of a new HIV treatment called Maraviroc in August 2007. Maraviroc is the first of an entirely new class of HIV treatments called Entry Inhibitors. Entry inhibitors work by blocking the entry of HIV into a healthy CD4 cell. This new class of HIV drugs offers another option for people infected with HIV that have become resistant to other classes of HIV medications. Maraviroc targets one of two receptors on the CD4 cell that HIV first attaches itself too before it an infect the cell. The receptor is called CCR5.

Mark Milano, Health Educator at the AIDS Community Research Institute of America, and Dr. Pete Gordon, HIV/AIDS expert from Columbia University, join Reporting AIDS to discuss Maraviroc.

In the state where Terry Schiavo was eventually allowed to die, privacy is being challenged again. Alzheimer’s Community Cares, based in West Palm Beach, Florida, has agreed to test the use of an electronic tag inserted under a patients skin to see if it will improve medical care. Protocols for the pilot program, the first of its kind in the United States, are still being developed, said Mary Barnes, CEO at ACC.

The technology, called Radio Frequency Identification Devices, is not new. RFIDs have been used as tracking and security devices for years. They’re the tags used on retail items like clothing and over-the-counter medications that make security alarms beep when people walk out the door with them. However, they’ve never been used in this way in humans.

So why now?

“Alzheimer’s is doing to privacy, what 9/11 did to civil liberties,” according to Barnes. “I don’t want to see images in Florida like I saw at the Super Dome.” She stresses that this is a story about safety. “The people laying dead on the stairwells were probably unable to communicate because of Alzheimer’s or a similar mental disorder,” said Barnes.

VeriChip, the manufacturer of the VeriMed chip, traces its own roots to disaster. After 9/11, when the World Trade Center lay smoldering in a pile of rubble, rescue workers scrawled ID numbers across themselves for fear they would go missing in the fray. According to VeriChip, “it was evident there was a desperate need for personal information in emergency situations.” A short-time later VeriChip was founded and the idea to use RFIDs in humans was hatched.

The Food and Drug Administration approved the use of VeriMed in December 2004. Today, over 600 hospitals across the U.S. have the equipment to use VeriMed, supplied to them at little or no cost by VeriChip. In February 2007, VeriChip also went public. The stock rose from a low of $4.27 to a high of over $9.00 in less than six months.

A singer and volunteer at ACC, Richard Ribner thinks the chips could be a great help to patients. “Anything you can do to help these guys would be great,” said Ribner. “They can’t remember much.” Ribner moved to Florida after working in New York City his whole life. He sounds like Tony Soprano, “I ran a biz-ness,” he said. Ribner, who’s been using a computer to sing Bobby Darin and Frank Sinatra tunes at ACC, said he doesn’t fear technology. “If it’s 80 percent helpful and only 20 percent a risk, why not?”

It’s an opportune time for VeriChip to push VeriMed. Health care costs continue to climb at twice the rate of inflation and policy experts are recommending technology be integrated into health care. They believe technology has the potential to cut costs and medical errors by as much as 20 percent. President Bush seems to agree, having signed an Executive Order last year designed to get health care providers to use Electronic Health Records by 2012. However, there are still no privacy guidelines to steer the creation of EHRs.

A letter sent by the General Accounting Office to Mike Levitt, Secretary of Health and Human Services, highlights the problem. Levitt was reprimanded for allowing technology companies to enter the market without privacy guidelines in place (there are about 20 technology companies selling the hardware and software for EHRs - including Microsoft). The Health Insurance Privacy Protection Act (HIPPA), passed in 1996, does not cover internet and electronic technologies, an integral part of EHR’s.

Paul Tagliaferri, another Florida retiree, said he’s concerned the wrong people will get access to private medical information. “Who’s to say how private medical information could be used to discriminate,” said Tagliaferri. Tagliaferri worked as a comptroller in Philadelphia until retirement. He’s unsure how the chips will ultimately be used, especially by the government. “Can you imagine the day the government requires Medicaid or Medicare enrollees to get implanted with a chip? It won’t be mandatory, but I can hear it,” said Tagliaferri, in a sardonic-troubling way, “No chip, no caid.”

Surprisingly, the one group consistently opposed to RFIDs is End-Timers: people who believe future events will unfold as described in the Bible. Most conservative Christians think the devices are the “the Mark of the Beast.” According to the Bible, it’s is a sign the world is coming to an end.

Ironically, it was pressure from conservative Christians that lead key Republicans to pass a law blocking Terry Schiavo’s husband from removing her feeding tube. Lawmakers were criticized at the time by members of both parties for meddling in the affairs of a private citizen. If the VeriMed pilot program proves a success, politicians may again feel the heat from Florida, caught between the need for personal privacy, and the President’s goals for EHRs.

John Mikytuck is a Scribemedia health reporter. He currently hosts Reporting AIDS, the only WebTV show devoted exclusively to covering the HIV/AIDS epidemic.

9/11 was a horrific tragedy. For most Americans, the nightmare is receding into the past. Life goes on, and coping becomes easier with time. But for others, the pain continues on a steady course… and may do so for a lifetime. The rescue and recovery workers that cleaned up the World Trade Center wreckage did not get many thanks or much glory. But they did get very sick.

It’s hard to fathom the magnitude of destruction caused by the two kamikaze airliners that crashed into the twin towers on that clear, sunny morning in September. Two 110–story skyscrapers, each weighing around 350 million pounds, crumbled to the ground, billowing dust, smoke, and fire into the air. But it was not just the towers that were ruined—all seven of the buildings comprising the World Trade Center either collapsed or were demolished beyond repair. The heap of debris smoldered for three months.

Someone had to clean up the mess, and the team that did it consisted of 40,000 firefighters, police, medical responders, volunteers, and construction workers, and others. 40,000 pairs of lungs inhaled the caustic dust and noxious pollutants permeating the air. Six years later, thousands of these workers have severe respiratory problems, among them asthma, chronic hacking or “World Trade Center Cough,” and diminished lung function.

A recent study by Mount Sinai researchers found that nearly 70 percent of responders had new or worsened respiratory problems while working at ground zero. Other common health problems include chronic acid reflux, mental illness, and muscle, joint, and bone injuries from lifting heavy pieces of debris. And many of these ailments just won’t go away, even years after exposure to the noxious ground zero air. For many, the health consequences of the World Trade Center cleanup effort are debilitating, preventing them from exercising, working jobs require physical labor, and enjoying life as they once did.

For the past 5 years, doctors at Mount Sinai and other healthcare facilities in and around New York City have been monitoring and treating these workers through the WTC Worker and Volunteer Medical Monitoring and Treatment Program. Scribe Media talked to the doctors that run the program and accompanied one patient to his medical appointment.

Cancer sucks no matter how you slice it but when you’re under 40, it’s a whole different planet. Isolation, insurance, discrimination, fertility and lack of social networking resources are only the tip of the iceberg. Thankfully, an emerging social startup ImTooYoungForThis.org is taking the reins to change all that by making it hip to be a survivor and openly talk about the disease. Got cancer? Under 40? Sucks, huh? Get busy living!

ScribeMedia.Org talks with Matthew Zachery about the emerging use of social media networks that help patients thrive.

It began in 1977 with one deranged cell. That cell divided, creating progeny, and those progeny spawned more progeny. The divisions continued until an entire colony of cells was creeping through the back of the eyeballs.

Eyes are about the size of golf balls. If you could peer straight into them, you would see something like a thick shag carpet draped across their back walls. This carpet is called the retina, and its tiny fiber projections are cells shaped like rods and cones. These cells have exquisite sensitivity to light: the rods detect light and dark, and the cones sense color. Light waves bounce off objects in the environment, pass into the eyes through the pupil, and get flipped upside down and projected onto the retina. Whenever the eyelids are open, there is an upside-down movie of the world playing in the back of the eyes. Rods and cones convert this movie into an electrical signal and send it to the brain for processing.

The deranged cells multiplied like cockroaches, hogging room and looting resources a bit vague from the rods and cones. These ball-shaped intruders had no special function other than eating, growing and crowding space. They interrupted the movie playing on the retina, and eventually there were so many of them that the movie went black.

29-year-old Ivonne Mosquera approached the starting line of the 2007 Boston Marathon. Her thick black hair was woven in a French braid, the way she used to wear it for ballet, tap and jazz class.

Over 20,000 runners were competing on that windy day in April. Ivonne stood with four running friends, including 28-year-old Mike Oliva, her training partner. Ivonne and Mike had been running the loops of Central Park for months in preparation for this morning.

“You could feel the anxiety and nervous energy around you … people were shaking at the start line,” Mike says. “But we are the most laid-back runners. We just go out there and get it done,” he says. “Ivonne may have been nervous the night before, but she was loose by that time.”

When the race began, all those anxious runners flew by them.

Looking in through the window of the pupils, the doctors saw a creamy colored tumor staring back at them. The cancer had spread through both eyes, blindfolding the 13-month old baby and threatening to reach its talons into her brain.

The baby was diagnosed with retinoblastoma, a rare form of eye cancer that typically hits children before age five.

“In the world at the present time, 50 percent of children die” from retinoblastoma, says David Abramson, chief of ophthalmic oncology at New York’s Sloan-Kettering Cancer Center. The odds are much better in Western countries where medical care is good. In the United States, where some 300 cases arise annually, 95 percent of children survive. But usually one or both eyes must be removed, he says.

“Boston starts with a downhill, and then the hills kick in at the middle of the race,” Ivonne says. Most of those nervous runners who darted ahead of us at the beginning got tired during the uphills, and Ivonne and Mike had to pass them.

“I put my hand up and said ‘Excuse me please, excuse me,’” and “we slithered our way to the front. We got some dirty looks,” Mike says, laughing.”We were weaving around people and he was focusing on the course… looking out for train tracks or big puddles or big holes.

Mike and Ivonne are a team. “I know her really well, and I can feel her body temperature” and what’s happening with her the whole time, Mike says.

“I’ll sometimes start singing,” Ivonne says. “My favorite is ‘country roads, take me home, to the place…’”

“Sometimes it gets quiet and someone starts that song and it gets us loosened up a bit,” Mike says. “At first, everyone around us thought we were nuts,” but “then a lot of people joined us along the way.”

It was mid-race and people were getting tired. “Then here we come in this pack, singing, breathing, chatting. Our energy comes at a good moment for people,” Ivonne says.

Within months of the diagnosis, the baby’s family moved from Colombia to New York City, where some of the best retinoblastoma doctors could be found. The doctors at New York Presbyterian Hospital removed the baby’s eyes, replaced them with ocular prostheses, and quashed the cancer with radiation and chemotherapy.

At mile 14, the girls from Wellesley College were screaming like nuts. “You can hear those Wellesley girls from a mile away,” says Mike, who likes to give high-fives to people in the crowd. When the crowd screams like that, “you lose your senses and you don’t feel pain anymore.”

With every step, Ivonne focused on maintaining her pace. “Neither of us were wearing a watch,” but we kept a steady rhythm through the race “just going by feel,” averaging just under an 8-minute mile, Mike says. But by the end, Ivonne and Mike felt really good and started moving faster. Two of the friends who started the race with them fell back, unable to keep the pace.

“For the last six miles, nobody passed us…we just passed people” Mike says.

Around mile 23 or 24, they had their fastest mile, somewhere around 7 minutes. “It was crazy how good we felt,” Mike says.

“Mike can feel if there’s a pop [surge of strength] in my legs,” Ivonne says. When Mike feels that pop, he pushes her to go faster.

“Everyone is cheering, going crazy” at the finish line, Mike says. “You’d be surprised how many people get confused when they see us running attached. I totally forget that she’s blind all the time.”

Ivonne Mosquera finished the Boston Marathon in 3 hours and 26 minutes. The average time for a woman marathoner in the same age group is 4 hours and 59 minutes. Mike Oliva guided her through the race with a tether.

It’s been almost thirty years since the doctors in New York removed Ivonne’s eyes. She is completely blind and has no memories of sight. She has never experienced light or color and cannot visualize three dimensions. Yet she earned a degree in mathematics from Stanford University and taught English as a second language to hospital staff at Stanford Medical Center. She climbed Mount Kilimanjaro, the tallest peak in Africa, scrambling up a rocky mountainside at four in the morning. Every day, she takes the New York subway between business school at Baruch College, an internship at IBM, and her home where she lives with her boyfriend. She is training for her seventh marathon and second triathlon.

This is just the beginning for this 88-pound bolt of life.

“When I’m eighty, I still to be there in the park,” Ivonne says. She wants to be where the athletes race, train, warm-up, and stretch. “Even if it’s cheering people on and handing out water, I want to be there.”

Coco Ballantyne is a reporter for HealthDot and ScribeMedia