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Highlights from Health Journalism 2008 Date: 03/28/08

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Nearly 600 attendees gathered for conference

Many thanks to all our conference speakers and participants for making this such a great conference! Please watch your e-mail for our electronic conference evaluation. Tip sheets and webcasts from the conference are now available.Elizabeth Edwards, keynote speaker

Sunday's highlights:

• Multimedia tools - Scott Hensley's blog of tips; Amy Eisman's tips for writing for the Web; Pia Christensen's tip sheet, Wading into multimedia; Joy Robertson's Shooting your own Stories with a Camcorder

Saturday's highlights:

• Elizabeth Edwards, wife of former presidential candidate John Edwards, discussed health care reform and John McCain's plan at the Awards for Excellence in Health Care Journalism Luncheon.
• APHA and partners unveil public health blueprint for tackling climate change
• U.S. Roles in Global Health: Which Direction?
• Life after cancer: Survivorship planning
Medical Tourism: Trend or Aberration?
• Freelance: Finding success through the trades
• Panelists release list of independent medical experts

Actor Dennis Quaid at Health Journalism 2008Friday's highlights:

• Luncheon roundtable: Which way health reform?
• HHS announces new data about patients' views of their hospital
Community ... the health story
• Sociological aspects of breast cancer
• Economics of health 101
• What health systems of other developed nations can teach us
Clinical research into vaccines for cancer and other diseases
• Covering nursing homes
• How will retiring boomers affect the national health agenda?
• Current controversies in transplantation

Thursday's highlights:

• Actor Dennis Quaid discussed his very personal perspective on medical errors, relating how his newborn twins were given massive overdoses of Heparin in November.
Founder's roundtable
• Opening night reception

Multimedia tools

Scott Hensley's blog of tips: ahcjblogtips.wordpress.com

Wading into multimedia: Pia Christensen's list of top sites for tutorials, advice and equipment reviews

Tips for Web writing, headlines, blurbs: Amy Eisman of American University offers tips for writing for the Web.

Multimedia tools for telling stories: Shooting your own stories with a camcorder: Reporter/anchor Joy Robertson of KOLR-Springfield, Mo., finds that shooting a story alone with a small digital handheld recorder allows for a personal fly-on-the-wall touch and story subjects tend to relax. Robertson shares some tips on shooting with a handheld camera.

Lee Aase of the Mayo Clinic blogged about the panel.

Read more coverage from the conference.

U.S. Roles in Global Health: Which Direction?

Global health coverage in the U.S. is often limited to events of pandemic disease crises like the Ebola outbreak in the 1990s, SARS in 2003 and, more recently, the avian flu virus. Scott Dowell of the Global Disease Detection branch of the CDC explained in the Saturday panel that the center is currently focusing its efforts on planning for future outbreaks of that strain of the flu virus. Despite this trend, panelists Rachel Wilson of the global health nonprofit PATH and Daniel Epstein of the Pan American Health Organization both suggested that reporters try to focus some attention on progress that is being made through global health policy and initiatives.

Wilson highlighted her group's effort to lower the number of children born infected with AIDS in Africa. PATH developed a system of delivering one-dose pouches of medication to women about to give birth, allowing them to administer the drug to their newborn themselves. "In addition to reporting all the challenges we face in global health crises, we should pay attention to the things that are working and advancements that are made," Wilson said.

Journalists in the session asked questions that relayed their concern about finding news angles for stories like the one Wilson described. Some explained the difficulty of pitching these types of stories to editors or about gaining interest among readers. One made a plea to the panelists to find ways to make stories involving policy easier to tell in an anecdotal way. Other journalists offered advice, such as finding ways to localize global health stories and connect readers to the issues.

All the panelists pointed out that the United States is a major contributor to the health budgets of developing countries and therefore a driving force in setting the health agendas of those countries. Responding to an audience question, Wilson said there is a noticeable shift in attention among policymakers away from isolated diseases like AIDS and malaria and toward putting into place more solid infrastructure and training health workers to respond the demanding needs of developing countries. She pointed out that 3 percent of the world's health workers are dealing with 24 percent of the world's infectious diseases.

Wilson spoke about the President's Emergency Plan for AIDS Relief (PEPFAR), an initiative that is due to be reauthorized in 2008 and would potentially allocate $50 billion to combating the global HIV/AIDS pandemic. During the first five years of the initiative, PEPFAR provided $15 billion.

– Jessica Nuñez, AHCJ

Medical Tourism: Trend or Aberration?

High costs and unavailability of certain treatments are sending droves of Americans overseas for medical procedures.

Jim Gutman, vice president and executive editor of Atlantic Information Services Inc., who moderated a session on medical tourism Saturday, said the practice once common for plastic surgery and joint replacement is growing in other areas.

The number of Americans who seek operations outside the U.S. is unknown, said Wouter Hoeberechts, chief executive officer of WorldMed Assist, a company that helps patients with their overseas medical arrangements. Some say 150,000 and others estimate up to 500,000. Hoeberechts said what he is certain of is the anticipated growth in the next 10 years.

"Long term proections are very big ... $150 billion," he said. Hoeberechts said he doesn't think the trend will result in massive outsourcing, but will have niche appeal.

"I believe it is not an aberration, I believe it's here to stay," he said. The rising cost of health care in the United States is one of the driving factors in the trend of overseas operations. The savings is big, often as much as 80 percent, Hoeberechts said. A heart bypass for an uninsured American could cost $149,000 or $67,000 for insured, compared to $10,000 in India or $19,000 in Turkey. Others go abroad for procedures that are hard to find or unavailable in the U.S., such as hip resurfacing or disk nucleus replacements. Common procedures include those dealing with orthopedics, the spine, weight loss, cosmetics, cardiology and transplants.

Patients who seek overseas treatments may encounter difficulty transferring their existing medical records and receiving post-operation care in the U.S.

David Kibbe, M.D., senior adviser for the American Academy of Family Physicians, said technology will make transferring medical documents abroad easier. Kibbe said programs through Google, Microsoft and Intel are making the documents portable and liquidated. Documents in PDF formats are another option for transferring overseas.

Medical centers overseas are often more ready to use these electronic documents "than most of the hospitals in this country," Kibbe said.

BlueCross BlueShield of South Carolina started a separate company similar to WorldMed Assist called Companion Global Healthcare, which has an agreement with a network of U.S. doctors to provide post-operation care.

David Boucher, assistant vice president for health care services for the insurance company, is responsible for Companion.

"The whole aftercare process is part of the missing link here in the U.S.," he said.

Julius A. Karash, health care and business reporter for The Kansas City Star, said it was a challenge finding local patients willing to talk about their overseas procedure. One woman was afraid her insurance company would decline to pay for any complications that may arise from her bariatric surgery in Brazil.

Karash, who published a story in December on medical tourism, said he was struck by the consumer empowerment he discovered while reporting the issue. Americans are using the Internet to research medical procedures overseas.

Journalists should include tips for medical tourists and tell readers why this trend is happening, Karash said.

"This is a fun story to work on and it's a growing trend," Karash said. "There's going to be a lot more on this topic."

– Sarah Nail, reporter The Sedalia Democrat

Community ... the health story

Some people enjoy longer and healthier lives than others.

When trying to understand why, people often focus on genes, access to medical care and behaviors such as diet, smoking and sedentary lifestyles.

But social factors also can play a crucial role in adding or subtracting years from someone's life, including the community they live in, how empowered they feel at work, and their social status.

Such disparities help explain why Americans often live shorter, sicker lives than residents of other industrialized countries despite the huge sums we spend in this country on health care, said speakers at a "Community ... the Health Story" forum on Friday morning.

The panelists discussed how to tell this story in a compelling way, or as moderator and independent journalist Andrew Holtz put it, "so that even our editors will understand it."

Experts refer to the concept as the "social determinants of health," but Holtz suggested using an easier-to-understand term such as "community."

Research reveals that education levels, disadvantages in life, social isolation, discrimination, income and stress can influence life expectancy and the likelihood of getting certain diseases, said Dr. A.H. Strelnick, director of the Institute for Community & Collaborative Health at Montefiore Medical Center.

We need "to look under the surface for the true roots of our health problems," he said. Strelnick used a series of graphics to illustrate what he called "the social gradient," or how people tend to become sicker and die sooner as they move down in socioeconomic status.

Years ago, people assumed that high-powered executives had the most stress, Strelnick said. But studies comparing health with how much control or powerlessness people have at work tell a different story.

"The person most likely to have a heart attack was the janitor," Strelnick said.

In an example of how to put a compelling human angle on the story, the panel showed segments of a four-hour documentary series called "Unnatural causes: Is inequality making us sick?" The program will air on PBS over four consecutive Thursdays from March 27 to April 17.

The producers focus on people living in four communities. Using maps to illustrate their point, they reveal that conditions such as heart disease, stroke, diabetes and cancer are much more prevalent in some neighborhoods than in others. Poorer areas that lack supermarkets, safe streets and decent housing have more health problems than wealthier communities.

People in some well-to-do neighborhoods live seven to 10 years longer than others, said Llewellyn Smith, co-executive producer of the series and the founder of Vital Pictures Inc.

"If it isn't a fact of nature, that means we can do something about this," Smith said.

Many cities have data and maps that can help reporters show in a powerful way the clustering of diseases in certain communities, said Christine Herbes-Sommers, senior producer of the series.

One episode of the series focuses on Greenville, Mich., after a factory moves to Mexico for cheaper labor, Herbes-Sommers said. The show explores how hospital visits rose and people's health suffered after they lost their jobs and their finances spiraled downward.

For more information on the series, go to www.unnaturalcauses.org.

– Sandy Kleffman, Contra Costa Times

Edwards says McCain plan gives insurance companies a pass

Elizabeth Edwards
Elizabeth Edwards discussed John McCain's health care plan as the keynote speaker at the Awards for Excellence in Health Care Journalism luncheon.

Elizabeth Edwards, the keynote speaker at today's annual Awards for Excellence in Health Care Journalism, opened by answering the question she thought was on everyone's mind: "I'm doing well."

She was, of course, referring to her diagnosis of breast cancer that was first revealed following the 2004 presidential campaign and was found to have recurred last year.

But her fast-paced talk focused mainly on John McCain's health care plan, which she said will not solve the problems in this country. She repeatedly urged journalists to hold the candidates' feet to the fire and make sure they are telling the truth about their health care plans. She said journalists have the responsibility to "make the American voting public more informed."

Edwards said McCain isn't telling the truth about health care. She pointed to language on his Web site that refers to "building national markets by permitting providers to practice nationwide" and bringing costs under control. She said the language sounds good, but pointed out that different states, such as Delaware and Nevada, have widely varying regulations for corporations and that his plan would allow health plans to be based in states with fewer mandates. The McCain plan, according to Edwards, would allow consumers to buy cheaper insurance from companies in less-regulated states but then they will have issues with pre-existing conditions or have high deductibles.

She described McCain as "trying to give companies a pass on regulation by allowing a national playing field." But, she said, the problem is that the voters know nothing about the regulations.

Edwards pointed out that McCain, as the son of a Navy officer and then an officer himself, has never spent a day in which he wasn't eligible for government-run health care yet he regularly denounces government-run health care.

While taking questions from the audience, Edwards was asked who she wanted to be the next president and which candidates' health care plan she liked best.

"John Edwards should be the next president," she said. She did say she prefers Hillary Clinton's health care plan and that it is similar to the one proposed by her husband when he was a candidate.

Edwards got several laughs from the crowd, particularly when she paused in her talk to check on the halftime score of the University of North Carolina women's basketball team - it was down at the half but she predicted, "That's OK; we can make that up." (North Carolina won 78-74 over Louisville to advance to the Elite Eight.)

Later a cell phone could be heard in the crowd and she paused to tell the audience member "Check it and make sure it's not your kids."

Health care reform is "real life with real life consequences if this is put into place." She talked about living with her diagnosis and her access to the best medical care but that on the campaign trail she met many women with similar conditions who don't have the resources and care that she does. "Don't let those people stand alone," she told the journalists.

— Pia Christensen, managing editor/online services, AHCJ

Panelists release list of independent medical experts

During Saturday's "Lies, damned lies and medical statistics: How to interpret the evidence," moderator Shannon Brownlee, Schwartz Senior Fellow at the New America Foundation, and independent journalist Jeanne Lenzer announced a new list of medical experts who have pledged that they are not receiving industry funding.

The 75 experts from eight nations have expertise across a wide range of disciplines. Each has pledged that he or she is not receiving industry funding or considerations - nor have they for at least the past five years.

The experts include: two former editors of the New England Journal of Medicine, the former editor of the Western Journal of Medicine, current editors of American Family Physician and Public Library of Science-Medicine; former FDA advisors; physician educators; researchers; bioethicists; epidemiologists, methodologists, geneticists, and clinicians from a various specialties; medical whistleblowers; and several medical journalists.

Brownlee and Lenzer released brief biographical sketches of some experts and promised to update the list on a quarterly basis to be released to journalists on request.

Contacts: Shannon Brownlee 443.994.6142 shannon.brownlee@comcast.net
Jeanne Lenzer, 845.207.3020 jeanne.lenzer@gmail.com

Freelance: Finding success through the trades

Trade publications not only play an important role in disseminating medical information, but they can also be a lucrative and stable source of work for freelancers, according to a panel of writers and editors at the Saturday session "Freelance: Finding Success Through the Trades."

Writing for trades allows freelancers to delve deeper into topics than many shorter consumer assignments, said Lisa Gill, an independent journalist based in New York City. Gill also noted that the benefits include generous pay, regular work, on-time payment, and an editing process that allows for fast closure on stories.

Another benefit of working for trades is the ability to get ahead of the news, according to David Bronstein, editorial director for the Hospital Group of McMahon Publishing. He noted topics such as counterfeit medications, bariatric surgery, dangers of supplements and rural hospital staffing are often written about in trades well before they reach consumer publications.

Bronstein said freelancers gain exposure because many in the medical fields prefer to read trades over peer-reviewed journals. Trade publications, he said, are easier to read, timelier, more concise and cover areas like practice management that are absent from journals.

Writing for trades provides an opportunity to specialize in areas of interest including information technology, health care policy or practice management.

McMahon's nine publications are about 80 percent written by freelancers. Bronstein said he likes using freelancers who have written for consumer publications because they have a "good, concise style" that "helps liven content and improve readability."

Writers inexperienced with trades won't be sent out without a net. Most editors provide a potential source list and some background information on the topic. Mary Jo Dales, editorial director for International Medical News Group, said her editors help guide freelancers through the process.

McMahon's pay typically falls somewhere between 75 cents and $1 per word, Bronstein said. Dales said she prefers to pay per story rather than by the word, and pay depends upon the length and difficulty of the articles. A day-long conference coverage in which a writer stays on site and writes three stories per day, would net about $1,000 per day, she said.

But writing for trades isn't always rosy. First, unlike consumer publications, editors will run the copy by sources; second, because the writing is for practicing clinicians, it must be highly accurate; third, assignments are sometimes stalled if information is embargoed; and finally, major sources may not be as likely to return a call from someone writing for a a trade as they would from The New York Times.

Querying the editors is basically the same as pitching a consumer publication. Bronstein and Dales said they accept well-crafted pitches or offer assignments to writers who contact them with background information and writing samples.

Bronstein can be contacted at davidb@mcmahonmed.com. Dales can be reached at m.dales@elsevier.com.

– Tammy Worth, freelance writer, Blue Springs, Mo.

Life after cancer: Survivorship planning

Medical journalists continue covering cancer – in any form – from research, to personal stories, to prevention, but this year's conference allotted a session on survivorship that can be easily overlooked as one of the important segments on the life of cancer patients and their families.

Panelists Aziza Shad, M.D., Georgetown University Hospital; Kenneth Miller, M.D., Yale Comprehensive Cancer Center; Priscilla A. Furth, M.D., Lombardi Comprehensive Cancer Center; and Rana Kahl, a cancer survivor advocate with Susan G. Komen for the Cure, talked about survivorship planning as an essential way of combating the disease.

Shad, an expert on childhood cancer survivors and their families, emphasized the need for follow-up care for pediatric cancer survivors.

"The mission of the long-term follow-up program," Shad said, "is to follow survivors carefully for the late effects, to educate the patients about their cancer and its treatment, to provide education on risk taking behaviors, healthy lifestyle, fertility, employment and health insurance issues and to transition them to adult programs as they grow older."

Shad collaborated with colleagues from Georgetown University Hospital and published a book, "The Next Step, Crossing the Bridge to Survivorship." The book tells stories of children and their families, how to survive and face their biggest challenges and cross the bridge towards a brighter tomorrow.

Miller, a medical oncologist, is a survivor himself. His wife, Joan, was diagnosed with acute leukemia and recovered. He shared pictures of his patients and summarized his talk with quotes from them about decision making:

"Making decisions about my own treatment helped me to maintain my self-identity, individuality and sense of self worth," he read. Another patient's experience: "The process of healing, during the after illness, is physically emotional, social and spiritual. My life turned upside down after the diagnosis. The decision-making process helped me which transforms a sense of disorder into one of order." Miller ended with another quote, "Some of the choices that I made have less to do with medical science or to do with my personal preferences. I did not choose to get cancer but I did help choose how to recover." Miller recently published a book, "Choices in Breast Cancer Treatment," a compilation of stories of women and the choices they made.

Furth, professor of oncology at Lombardi Comprehensive Cancer Center, on the other hand, concentrated her talk on one aspect of survivorship, which is yet to be widely acknowledged as part of treatment of cancer: the role of physical fitness.

"Breast cancer, the post-menopausal breast, and colon cancer are two cancers in which there has been some progress with drugs and it has been shown that physical exercise or fitness can actually prevent the cancers," Furth said. Each patient can have recommendations based on his or her needs which can be beneficial and can involve the family.

"What I would I finish with?" asked Furth. "I want to increase the recognition that physical fitness and activity should be part of normal cancer survivor practice. We need to do some research to look at the cause and effectiveness. We would like to know more mechanism, as evidence of stage medicine. We would like to work out some optimal program and most importantly is the cost coverage." This then, Furth said, can convince insurance companies that the program is part of the coverage.

Finally, panelist Kahl, is a cancer survivor advocate. Diagnosed with breast cancer on her 33rd birthday, the young mother's experience was not a traditional breast cancer experience. After chemotherapy, she was able to have children, was able to breast feed and is constantly being monitored for early menopause. For Kahl, information should always be available for patients with unusual situations.

"From a cancer survivor's perspective," Kahl said, "the journey is very overwhelming. I think it is absolutely imperative that there is some type of road map that is available for cancer survivors as newly diagnosed to navigate different options. Finally, when you are in the business of saving your life, the last think you worry about is ‘can I return to my normal physical fitness regiment?' Even though after you get through that part, that becomes the most important thing you go to, to become ‘normal.'"

- Shatto Light, ASIA, the Journal of Culture and Commerce

APHA climate change briefing

AHCJ board member and independent journalist Andrew Holtz moderates a news briefing with officials from the American Public Health Association, including Dr. Georges Benjamin, Dr. David Satcher and Dr. Ed Maibach.

Blueprint deals with climate change from public health perspective

Officials from the American Public Health Association and its partners unveiled a public health blueprint for tackling climate change in advance of National Public Health Week (April 7-13). This one-of-a-kind consensus document, compiled by a group of leading climate change and public health professionals, outlines strategies to mitigate and prepare for the effects of climate change.

Freelancers present work, ideas to editors

At the Freelance PitchFest, 44 writers met with and pitched stories to 11 assigning editors from newspapers, magazines and Web sites.

HHS briefing details new hospital data

Michael Leavitt, secretary of the Department of Health and Human Services, announced that new data about patients' views of their hospital care is at Hospital Compare.com [watch CSPAN video | press release | Web site ranks hospitals, lets would-be patients compare | Wall Street Journal Health Blog | webcast and podcast]

Current controversies in transplantation

Wall Street Journal reporter and panel moderator Laura Meckler told attendees at the "Current Controversies in Transplantation" session that "the most interesting thing about the field of transplantation is that unlike most any other field of medicine, we have true rationing. There just aren't enough organs and no matter how much money you have, you can't yet buy one."

Although current U.S. law prohibits it, panelist Scott Halpern, M.D., Ph.D., a bioethicist with the University of Pennsylvania School of Medicine, said paid donation may be a wave of the future. However, there are good reasons to oppose it, he said. Payment might cause some people to overlook the risks associated with live donation. The poor may be exploited, altruistic donation may decline, and society might ostracize paid donors, much as society condemns prostitution.

Touching on another issue in transplantation, Mayo Clinic surgeon Mark Segall, M.D., described a potential new kidney allocation system that more appropriately matches donors and recipients. Currently, kidneys are allocated based on several criteria, with the most weight given to those who have waited the longest. Sometimes this results in a scenario where a "young" kidney from a 19-year-old donor might be transplanted into a 70-year-old recipient, who could die a couple years later with a still functioning kidney.

An alternative approach was studied by a special committee of the United Network for Organ Sharing (UNOS), which has developed an allocation plan based upon a continuous scoring system for candidates, called life years from transplant (LYFT); a continuous scoring system for donor organs, called the donor profile index (DPI); and an opportunity for patients to move up the waiting list over time. LYFT, for example, measures increased life span as a direct result of receiving a kidney transplant versus remaining on dialysis. Under the proposed allocation method, a young kidney would generally go to an age-matched recipient, and an older or less-perfect kidney to an older recipient. Developed over the past four years, the new allocation plan has not yet been adopted.

Another kidney transplant specialist, Johns Hopkins University's Robert Montgomery, M.D., described paired donation, a method of live donation that increases the number of recipients. A new method utilized over the past few years, paired donation involves individuals who wish to give a kidney to their friend or loved one, but cannot because they are incompatible (e.g. wrong blood or tissue type). Now, the donor and recipient are matched with another incompatible couple and the kidneys are exchanged between the pairs. For example, donor A wants to give to recipient A, but is incompatible. Ditto for donor and recipient B. In paired donation, donor A's kidney goes to recipient B (who is a match), and donor B's kidney goes to recipient A. This method can accommodate several potential donors and recipients. Montgomery noted that his team plans to do a six-way paired donation transplantation procedure in the near future.

On another issue involving live donation, Georgetown University surgeon Lynt Johnson, M.D., touched upon guidelines and informed consent. He noted that live liver donations began in 1998 and had reached about 500 a year in the United States by 2001. Following the death of two liver donors that year, the number of live liver donations dropped to about 300 a year - a number that has remained fairly constant. In November 2003, UNOS adopted bylaws requiring live donor liver transplant programs to be certified. Then, in June 2006, the Health Resources and Services Administration (HRSA) required that guidelines be developed for donors of all living organs, including kidney and liver.

As a result, a UNOS living donor committee reviewed all the existing living donor protocols and found a wide variation in living donor evaluation and the consent process. The committee developed a set of voluntary recommendations that included donor evaluation criteria, an informed consent process, and independent donor advocacy. The proposal was released in July 2007 to mixed reaction. Critics felt the proposal was too restrictive, Johnson said.

While the standards for a live donor transplant program have evolved after the two liver deaths in 2001, "a guiding principle to perform a living donor transplant should include the issues of limited alternative donor sources, low morbidity and mortality risk, as well as a good expected outcome in the recipient," Johnson said, adding that voluntary standardized guidelines for evaluation and informed consent are currently in place or are being developed.

– Sue Pondrom, independent journalist

How will retiring boomers affect the national health agenda?

Today, 37 million Americans are over 65. By 2020, this number is predicted to reach 53 million. That, combined with a recent RAND study that found "vulnerable" older adults receive the "minimum standard for acceptable care" only half of the time, suggests that if eldercare isn't already an urgent concern, it soon will be. As panel moderator David Gulliver of the Herald-Tribune in Sarasota, Fla., put it, "If [this issue] hasn't hit your community yet, you can be sure it will."

At the Friday afternoon panel, Daniel Perry, executive director of the Alliance for Aging Research, placed the issue in a broad context, summing up the staggering costs of health care for various conditions most likely to affect seniors: $448.5 billion was spent on cardiovascular disease and stroke in 2007 alone; another $174 billion on Alzheimer's. By 2030, he said, we'll be spending $16 trillion on health care, with 171 million people managing a chronic condition. With these and an array of other alarming statistics as a backdrop, the panelists discussed what needs to be done to prepare for the 78 million baby boomers set to begin retiring in just a few years.

Perry and the other panelists touched on the need for increased geriatric training, while explaining the disheartening trend of health care professionals moving away from the specialty and medical schools directing most funding toward high-tech fields. Geriatrics, he said, is "low-tech, high-touch." Today, less than one percent of nurses are certified in geriatrics, a situation Perry described as a "great untold story."

Joshua Wiener, senior fellow and program director of Aging, Disability and Long-Term Care at RTI International, focused his presentation on the shifting attitudes toward long-term care. While long-term care may equal "nursing home" in some people's minds, there are far more individuals in paid home care (2.2 million compared to 1.2 million in nursing homes). Given this, there has come about a "bipartisan agreement" in the U.S. to shift more focus to home- and community-based care instead of institutionalized care. Discussing the high turnover and low pay of geriatric health care workers, Wiener said, "We have to figure out some way to get many more people into the long-term care workforce than are there now."

AARP president-elect Jennie Chin Hansen centered much of her talk on the "hidden burden of cost" that falls on "informal support," or the family and friends who often wind up doing a great deal of the long-term care giving. 80 percent of care, she said, is "informal" and more than 90 percent of people give up work to become a caregiver at some point in their lives. This results in incredible financial strain as people often give up their entire income for extended periods of time.

She addressed efforts being made in different states (particularly California) to test cash benefits for these informal caregivers. Easing the economic burden on family caregivers is one obvious benefit of this policy, but there also seems to be greater continuity of care. Not to mention, in families where English is a second language, "you have more cultural and linguistic compatibility" when family members are able to be primary caregivers.

During the brief Q & A session, a public health nurse asked the panel about the rise of nursing homes overseas. She referred to some homes in China that have been described as "five-star hotels," and wondered what the panelists thought about "exporting our parents" to other countries for more affordable long-term care. Hansen said the idea makes sense from a pure dollars standpoint, but cautioned that regulation and monitoring could be a concern. Wiener made this convincing observation: "I fear for the nursing home resident visited once a year on a trip. Family is the most important part of ensuring quality care."

– Benj Vardigan, independent health writer, Oakland, Calif.

Get webcast or podcast of this session.

Clinical Research into New Vaccines For Cancer and Other Diseases

Research into new vaccines for cancer and other diseases is ongoing, and attendees got an update during Health Journalism 2008.

Steve Sternberg, reporter for USA Today, moderated a panel that included Dr. Richard Schlegel, professor and chair of the Department of Pathology at Georgetown University. Other panelists were Dr. Melinda Wharton, with the Centers for Disease Control and Prevention and Dr. John Marshall, medical oncologist at Georgetown University Hospital.

According to Wharton, a vaccine for hepatitis A, which was recently added to the childhood vaccination schedule, has dramatically reduced the disease in the American Indian/Alaskan Native population.

She also discussed how vaccines make it from the lab into doctors' offices.

According to Wharton, the process is lengthy. "In the private sector, insured people mayor may not have new vaccines covered," she said. It may take awhile before companies decide to cover the vaccines for their employees, she added.

Schlegel pioneered the vaccine for HPV, the only new vaccine so far this century. He discussed how all cervical cancers express the E6 and E7 genes. "If you can shut them off at the molecular level," he said, "you can shut down cervical cancer."

According to Schlegel, cervical cancer is the second leading cause of cancer deaths in women. Four out of five cases of cervical cancer are in developing countries, he said, and, in the United States, there's a much higher rate of cervical cancer along the Appalachian Trail.

He said the HPV vaccine needs to become more affordable in order to reverse those statistics. That, he said, would require things such as lower manufacturing costs and higher stability of the vaccine.

According to Schlegel, he's working on a second generation of the vaccine called Capsomere that's expected to be more affordable than what's currently available.

John Marshall discussed his research into the creation of a therapeutic vaccine for chronic diseases.
He said, for the last ten years, researchers have been looking into using the immune system to fight disease. According to Marshall, only today do we have the technology and understanding to wage a real war on cancer.

There's a lot of data available, he said, but not much science. But, he added, progress is being made.

The immune system can, if stimulated in the right way, go after cancers, Marshall said. But he said that they need to know how to "cut the brakes" on the immune system, too.

He warns people not to be complacent. According to Marshall, no one should accept current therapies as "standard."

– Michele Skalicky, KSMU-FM, Springfield, Mo.

What Health Systems of Other Countries Can Teach Us

While health care systems in other countries avoid some of the big problems experienced in the United States, it is unlikely that America can easily adopt features that work elsewhere.

After describing Canada's health care system in the "What Health Systems of Other Developed Nations Can Teach Us" session, Andre Picard, public health reporter at The Globe and Mail in Toronto, said health systems reflect the values of the country in which it operates.

"Health care systems have to be culturally appropriate," Picard said. "We are a country that believes in collectivity as much as individual rights."

Picard was one of four speakers in a session moderated by Jonathan Cohn, senior editor at The New Republic. John Appleby, chief economist at King's Fund, described the health care system in England, one of four systems operating in the United Kingdom; Victor Rodwin, professor of health policy and management at New York University, spoke about the French health care system; and Paul Thewissen, counselor at the Royal Netherlands Embassy in Washington, discussed the system at work in The Netherlands.

The four systems have little in common except that they all provide universal access to a certain level of care and each accounts for 10 percent or less of its nation's gross domestic product.

Canada: Care is delivered privately by not-for-profit hospitals and doctors working in private practices that bill the government health plan for their services. "Medically necessary" services are covered; drugs and dental care are not covered, except for poor and elderly citizens.

Picard described a cost-effective system in which rationing is explicit; Alberta, for example, will pay for 400 bariatric surgeries this year, regardless of demand. Wait times for elective surgery and physician visits can be long, and the system is slow to adopt new technologies.

England: Now in its 60th year, the National Health Service shows no signs of instability. The public system is complemented with a small private system; most general practitioners and dentists contract with the NHS.

The system is informed by two perspectives on equity: Rich pay more than poor via a progressive tax code and equal access is provided for equal need. Every three years, a lump sum for health care is apportioned to geographic areas based on need. For example, an area with higher mortality rate or larger population of elderly receives proportionately more than a healthier, younger area.

The Netherlands: A highly regulated private health care system that is moving to managed competition, the country has an individual insurance mandate. Health insurers must accept all applicants and charge the same premium for all members; low income residents receive tax breaks to help pay premiums.

Thewissen said the system values primary care, and 90 percent of residents have a primary provider relationship. Problems with waiting lists for access have disappeared in recent years and because access to a physician is readily available, emergency departments are used for true emergencies. Prescription drug use appears to be significantly more conservative than in the United States.

France: Coverage has been growing incrementally for more than 60 years, and universal coverage was achieved in 2000. Although there are multiple health systems, the government is the single payer and reimbursement rates are uniform. Patients pay an 8 percent co-share for services and drugs.

Employers are mandated to provide coverage for workers. Physicians are not highly paid; Rodwin estimated that general practitioners make the equivalent of between $60,000 and $70,000 a year.

– Lola Butcher, independent health care writer

Money and health

In the "Economics of health 101" on Friday morning, the panelists discussed how much money is spent on health care, where it goes and why the job of slowing down spending growth is so difficult.

Moderator and independent journalist Bob Rosenblatt opened the session with some of the basics:

  • Health care spending in 2006 was 16 percent of the U.S. gross domestic product, up from 12 percent in 1990.
  • 46 percent of money spent on health care comes from government payers.
  • While the number of uninsured Americans has grown in recent years, their proportion of the population has remained fairly steady over the past decade. They accounted for 15 percent of the population in 1993 and 15.8 percent in 2006.

Paul Fronstin, senior research associate for the Employee Benefit Research Institute, said the notion that employer-provided health insurance coverage is disappearing doesn't reflect the full story. About 60 percent of Americans receive coverage through employer-sponsored plans, according to the most recent statistics.

Most employers with 200 or more employees continue to provide health insurance to their workers, he said. And while the proportion of smaller employers who provide coverage fell from 68 percent in 2000 to 57 percent in 2007, the current level isn't much different than it was in 1996.

Gail Wilensky, a former director of Medicare and Medicaid, provided an overview of the two government health programs:

  • Medicare covers about 44 million people (7 million disabled and the rest elderly) and accounted for $425 billion in spending in 2007.
  • Medicaid covers about 60 million people (two-thirds are mothers and children) and accounted for $310 billion in spending in 2005.

The latest report from the trustees who oversee the federal government's trust fund for Medicare indicates that the fund will run out of money by 2019, and that beginning this year spending will outpace annual revenue from the wage tax that funds much of the program.

"It's a big issue that will only get bigger in the future," she said. "It's going to be a really serious political problem." The increases in spending haven't translated into higher quality of care, she said.

She suggested several ways to address the problem:

  • Realign financial incentives for providers so that those who provide higher-quality and efficient care are rewarded.
  • Increase competition in the healthcare system (she pointed to the success of the Medicare Part D drug program as an example).
  • Increase the eligibility age for receiving full Medicare benefits for those without disabilities to 70 or 72.
  • Reduce coverage for people with higher incomes.

"None of these will be easy, and the last two will probably be the hardest," she said.

Paul Ginsburg, president of the Center for Health System Change, said the rising cost for health care, driven largely by the expansion of technology, is undermining the mechanisms that pay for the care.

He said the United States spends $477 billion more a year on health care than any other developed country when adjustments are made for income.

He said the much-reported role of aging Baby Boomers in the rising cost of healthcare is "vastly overstated."

Most politicians don't have the stomach for dealing with the healthcare financing problem because doing so runs the risk of angering constituents. "There is so much fear among political leaders of talking about costs," he said. "I think containing costs will include some pain."

Joy Drass, president of Georgetown University Hospital, said staff shortages are rapidly increasing the cost of operating hospitals, and they're quickly expanding beyond the ranks of nurses.

Georgetown currently pays as much as $72 an hour to employ temporary specialized nurses.

Hospitals also are feeling pressure to spend more on services from patients who have rising expectations of what their hospital experience should be, she said. "When they come into a hospital, they're not only going to have a good quality outcome but will have a hotel experience."

— Keith Darcé, Staff writer, The San Diego Union-Tribune

exhibitorsVisit conference exhibitors

A number of exhibitors are offering their resources and meeting with journalists in the exhibit hall downstairs from the main conference area. We encourage attendees to visit the exhibitors to learn more about what they have to offer.

You'll also find a cybercafe there, sponsored by the California HealthCare Foundation. You'll also find breakfast and coffee in the mornings and snacks in the afternoon.

Which way health reform?

In a lively roundtable session over lunch on Friday, it was clear there are a wide range of concerns and idea about how to reform America's health system. But it wasn't clear what direction this country will take.

Moderator Julie Appleby of USA Today kept the session moving while letting each of the four panelists outline their positions.

When asked about the single biggest impediment to reform, David Himmelstein, M.D., an associate professor of medicine at Harvard Medical School, identified the corporations who are making so much money off the current system.

Tom Miller, of the American Enterprise Institute, said that it was that people think the problem is someone else's responsibility.

Karen Davis, president of the Commonwealth Fund, said that, as an economist, she sees the problem as how we're going to pay for reform.

Julie Barnes, deputy director of the health policy program at The New America Foundation, said that "We can't have a fast enough conversation" about reform. She said all stakeholders need to have a yearlong conversation on the subject.

Appleby mentioned the attempt at health reform in the 1990s and asked "What's different this time?"

Miller said the difference is that people are asking better questions this time.

There was some discussion of the health reform undertaken by Massachusetts, which Himmelstein described as "already falling apart" because of the high price of administrative costs. "We have a fake program in place." Davis identified the message from Massachusetts as being "states can't do it alone." Barnes said the problem with that reform effort was that the state miscounted the number of uninsured. But, she said, "States are doing incredible things to solve the problem." She suggested that reporters look at what their states are doing to reform health care.

When asked about story ideas for reporters at the conference, Himmelstein suggesting talking to doctors about what they support and why. Miller wanted to know why it is that people think by shifting costs, things will improve. Davis suggested that reporters "follow the money" and look at the prices for medical devices and pharmaceuticals and the different prices that are charged to different people and groups.

— Pia Christensen, managing editor/online services, AHCJ

Related: From healthjournalism2008.blogspot.com.

Covering nursing homes

Charles Duhigg

(Photo/Jessica Nuñez)

Charles Duhigg (left), a reporter with The New York Times, speaks with a conference attendee following the panel about "How to cover local nursing homes and other long-term care." Other panelists included Charles Bell, programs director for Consumers Union; Lisa Chedekel from The Hartford Courant; Charlene Harrington, Ph.D., R.N., a professor of sociology and nursing at University of California, San Francisco; and Trudy Lieberman, director of the Health and Medicine Reporting Program at City University of New York.

Duhigg won second place in the large newspaper category of the Excellence in Health Care Journalism Awards this year.

Sociological aspects of breast cancer

University of Missouri student Thomas Cullen attended this morning's Breakfast with the Experts session about "Exploring the sociological aspects of breast cancer," presented by Vanessa Sheppard, Ph.D., M.A., of the Lombardi Comprehensive Cancer Center:

Sheppard said there are more than 2 million survivors of breast cancer in the United States, but "what happens after the diagnosis?" She said the period after a diagnosis is important and that there are few minority women focused intervention programs.

She gave a brief overview of breast cancer, highlighted disparities for ethnic minorities, discussed the relevance of socio-cultural factors and provided examples of interventions.

Most women could not accurately describe their diagnosis despite speaking with professionals. But the more they know about treatment, the better their adherence to the treatment plan. Sheppard also talked about the importance of spirituality in African American women being treated for breast cancer.

Sheppard founded Sisters Informing Sisters, which provides "survivor coaches" who can ask questions, help with basic terminology, help develop listening skills and know the options.

Survivor to survivor sessions are not normally held in medical settings and they focus on questions, getting records and support.

Sheppard said that "Education is definitely the key" and breast cancer is nothing to be ashamed of.

P. Parker from University of Georgia blogs about how personal the topic is.

Students blog the conference

Kimberly Davis, a student from the University of Georgia, is blogging from the conference at healthjournalism2008.blogspot.com.

Friday morning, Davis attended "Community ... the health story" – which turns out to be a very timely topic.

Also on Thursday:

• Two field trips visited the National Institutes of Health, Georgetown University Hospital, Georgetown University Medical Center, the National Library of Medicine, the HHS emergency operations center and the Family Health and Birth Center/ Developing Families Center.

• More than 40 people attended the special workshop on mapping health

Founder's roundtable

Following Dennis Quaid's discussion, several of AHCJ's founding members gathered for a roundtable discussion about the organization's past and the future of health journalism.

Conference attendees heard from Penny Duckham, executive director of the Kaiser Family Foundation; Andrew Holtz, M.P.H., an independent journalist and AHCJ board member based in Portland, Ore.; Duncan Moore, an independent journalist based in Chicago; Joanne Silberner, a health policy correspondent for National Public Radio; Melinda Voss, M.P.H., public relations director for Minnesota State Colleges and Universities System; Irene Wielawski, an independent journalist based in Pound Ridge, N.Y.; and Mark Taylor an independent journalist based in Chicago.

See a webcast of the roundtable.

Opening night reception

The evening ended with a reception recognizing AHCJ's 10 years. Attendees enjoyed the view of Washington's landmarks from the 14th floor of the Doubletree C