Health Affairs

I have pulled together a list of links to philanthropy-related blog posts that have come across my desk in recent weeks. I hope that you will see a few that pique your interest. During this short week between the Christmas and New Year’s holidays, I am keeping my “roundup” post—covering several important topics—short!

Happy New Year, GrantWatch readers, and see you next year!

Antibiotic Resistance

“Antibiotic Resistant Bacteria in Hospitals: A Time for Action,” by Arjun Srinivasan, who is medical director of the Centers for Disease Control and Prevention’s (CDC’s) new Get Smart for Healthcare campaign, and Ramanan Laxminarayan, who heads up Extending the Cure, a project funded in part by the Robert Wood Johnson Foundation (RWJF), Health Care Blog, Nov. 17. Extending the Cure is among the partners for the new campaign, which aims to improve use of antibiotics in inpatient health care facilities. These guest bloggers remind us that “one of the reasons our current antibiotics are losing their effectiveness is because we don’t use them properly.” The authors also make this important point: “Consumers also need to stop demanding antibiotics when they suffer from a viral infection.” Amen!

Health Reform

Health Insurance

“New Review Process for ‘Unreasonable’ Premium Hikes,” by Sara R. Collins of the Commonwealth Fund, Commonwealth Fund Blog, Dec. 22. Collins discusses proposed federal regulations related to a provision in the Affordable Care Act.

Role of Medicaid

“A Full Plate for Medicaid in 2011,” by Steve Somers of the Center for Health Care Strategies (CHCS), annual President’s Message, Dec. 9. (This is not technically a blog post but is similar to one!) Somers reminds us that under the Affordable Care Act, Medicaid eventually “will become the nation’s largest health insurer.” In response to a question from GrantWatch Blog,  the CHCS’s communications director told us, “Medicaid already covers more people than any other individual health insurer and by 2016 [Medicaid] is projected to surpass Medicare in terms of total spending.” The Robert Wood Johnson Foundation is a major funder of the CHCS. (Read more here about other funders of the CHCS.)

 Health Systems in Other Industrialized Nations

“International Health Policy Symposium Highlights Learning Opportunities,” Michelle Ries of the Commonwealth Fund, Commonwealth Fund Blog, Nov. 29. Ries reports on the fund’s thirteenth such symposium, which was held in November in Washington, D.C., and was attended by health ministers and “leading policy thinkers” from Australia, Canada, France, Germany, Netherlands, New Zealand, Norway, Sweden, Switzerland, the United Kingdom, and the United States, the post says. Results of an international survey were released at the event. Commonwealth provided core funding for the survey; cofunders included government agencies. Read a Health Affairs Web First article on the survey.

Nurses

“The Future of Nursing/The Future of the IOM Report,” by Rachael Watman of the John A. Hartford Foundation, Health AGEnda blog (the Hartford Foundation’s blog), Dec. 7. Watman discusses a meeting held in late autumn “to develop meaningful ways to translate” a 562-page Institute of Medicine report on nurses “into a blueprint for action.” Released in October, the report was funded by the RWJF. Centers for Medicare and Medicaid Services (CMS) administrator Don Berwick was among the speakers at the meeting. Watman concludes her post with her own recommendation: “Nurses and nursing organizations must coalesce as a unified voice with a united message focused on the patient,” and not have various segments of the field push their own groups, agendas and projects.

Obesity Prevention

“Obesity: We Need an All-Out Campaign,” by Jim Knickman of the New York State Health (NYSHealth) Foundation, President’s Corner blog (this post was originally published by the Huffington Post), Dec. 14. “To make a meaningful dent” in the obesity epidemic in the Empire State, this foundation’s president says, “I think we need to start thinking bigger and more systematically rather than trying to do things increment by increment.”

It’s time again for a roundup of recent posts on philanthropy-related blogs that you may want to check out—perhaps during a slower-than-normal week at work or as you kick back at home during the holiday season.

I have also included a link to a new Foundation Center document on foundations’ “policy-related activities” and a Baltimore Sun op-ed on what foundations should be funding.

Enjoy reading these, and enjoy the holiday season!

“Advocacy—Critical to Our Strategy, Now More Than Ever,” by Geoff Lamb, on the Foundation Blog of the Bill and Melinda Gates Foundation, Dec. 16. Lamb, who is the managing director of public policy at the foundation, describes what “advocacy” means for this big funder’s strategy. “We aren’t talking about influencing legislators and politicians, or grassroots organizing and campaigning,” he emphasizes. Read the post to find out about the Gates Foundation’s advocacy work and why it is important in today’s world.

“Lessons Learned for Improving School Food,” by Emily Art, on the Colorado Health Foundation’s Health Relay blog, Dec. 1. Art, a program associate at Grantmakers In Health (GIH), discusses a GIH strategy session, “Back to Basics: Promoting Healthy School Food,” which was held in Denver this fall. Art says, “Foundation policy efforts can help shape an environment more conducive to healthy eating” and lists three ways that philanthropy can help.

“Long-Term Care Residents Use Medicare, Too—and Lots of It,” by Chris Langston, on the John A. Hartford Foundation’s AGEnda blog, Dec. 16. Langston, Hartford’s program director, says that, thanks to the Henry J. Kaiser Family Foundation (KFF), “we now know that long-term care residents require almost double the per capita spending for Medicare services” compared with those “who don’t live in some kind of institution, be it a nursing home, assisted living facility,” or other non-Medicare-paid, non-home, residential setting. Can nursing home residents have a “medical home”? Can long-term care facilities be a part of an “accountable care organization”? Read about discussions at a KFF briefing in October.

“A ‘Thank You’ to Global Health Workers,” by Bill Foege, on the Foundation Blog of the Gates Foundation, Dec. 3. Foege, who is a senior fellow for this funder’s Global Health Program, reflects on the thirtieth anniversary of making “smallpox history.” Foege explains, “The global eradication of smallpox was certified in 1979 and endorsed by the World Health Assembly in 1980.” He says, “individuals working together were able to eradicate one disease already,” and adds, “I believe we can and must do it again.” Foege is a former director of the U.S. Centers for Disease Control and Prevention (CDC).

“This Should Give Us All Paws,” by Patrick Miller in Insight blog of the Endowment for Health (Concord, New Hampshire), Dec. 7. Miller, who is research associate professor at the New Hampshire Institute for Health Policy and Practice, University of New Hampshire, tells us about a trip to the vet for his black Labrador, Abby. “Hopefully, within the next year, access to my [health] records online will be as good as the access we have for Abby,” he comments. Read about Miller’s problem accessing his electronic health record (EHR).

“Virginia Lawsuit Shouldn’t Stop Health Care Progress Here,” by Matt Sundeen in the Colorado Trust’s CommunityConnection blog, Dec. 17. Sundeen, who is senior program officer for health policy at this statewide foundation based in Denver, focuses his post on the Virginia v. Sebelius court case regarding the individual mandate provision of the federal Affordable Care Act. Sundeen explains what, in his view, the decision by federal judge Henry E. Hudson for the Eastern District of Virginia means for Coloradans.

For more on this topic, read law professor Tim Jost’s Dec. 14 post on the Health Affairs Blog—our sister blog—titled “Examining Judge Hudson’s Decision on the Individual Mandate.”

“Wise Distributions: Moving Beyond the Giving Pledge,” by David C. Colby, on the Huffington Post, Impact section, Dec. 21. Colby, who is vice president of research and evaluation at the Robert Wood Johnson Foundation (RWJF), has some advice for the many signers of the Giving Pledge (including Michael R. Bloomberg, Warren Buffett, and Facebook founder Mark Zuckerberg), as well as other individual donors, about how to give money away wisely. He says that the RWJF relies “heavily on evidence” to make decisions about what to fund and suggests that strategy for others. However, the RWJF does invest “in many projects that do not have an evidence base”; some succeed; others fail. However, it has learned from the projects no matter how they turn out. Also, “when donors fund projects that lack evidence, it is important to leave a record that allows others to learn” from that effort in the future, he points out.

Did you know the Huffington Post has a section on philanthropy?

Related resources:

“Key Facts on Foundations’ Public Policy–Related Activities,” Foundation Center, December 2010. See where health comes in on the bar graph titled “Foundations’ Public Policy-related Activities by Fields of Interest, 2010.”

“Smarter Grant-Making: Foundations Should Invest More in Advocacy and Community Organizing Work, as Casey Has Done,” Aaron Dorfman of the National Committee for Responsive Philanthropy, Baltimore Sun op-ed, Dec. 20. Dorfman looks at grant making by the Annie E. Casey Foundation and the Harry and Jeanette Weinberg Foundation, both in Baltimore.

Risa Lavizzo-Mourey, president and chief executive officer of the Robert Wood Johnson Foundation (RWJF), sent out a Letter to the Field on Dec. 14. The letter’s audience was RWJF grantees and partners (and for “the nation’s largest philanthropy devoted solely to the public’s health,” that encompasses a big group). Here is some of what she highlighted.

What’s New

Lavizzo-Mourey started by mentioning an “entirely virtual meeting” that was held on Nov. 12 for 169 leaders of the foundation’s national programs and 102 foundation staffers. The meeting was webcast and included interactive plenary sessions and online forum discussions. Realizing that “we will still need face-to-face meetings,” she said that she was nonetheless “struck by both anticipated and unanticipated benefits of meeting virtually.” For one thing, the meeting’s cost “was substantially less.” No travel expenses, of course, and, related to that, Lavizzo-Mourey noted, a savings of some 68 tons of carbon emissions! When asked should the RWJF host a virtual meeting next year, more than 75 percent of participants responding to a post-meeting survey said “yes” or “yes with suggested changes.”

She then discussed the RWJF’s finances. “After an unprecedented and extraordinarily difficult year in 2009, when our financial assets and grant approval levels were down substantially” (which also affected the foundation’s approval of grants to be paid out in 2010), and “we said goodbye to almost 20 percent of our staff, our financial condition has improved and stabilized,” Lavizzo-Mourey reported in her letter. The RWJF expects “to end 2010 with an endowment of about $8.5 billion.”

She also reported that the RWJF’s board approved her recommendation to create a three-year, $100 million Impact Capital fund to leverage the foundation’s grant-making dollars “through a series of mission-related investments and strategic partnerships.” This fund will make “loans and other below-market rate investments or guarantees on behalf of grantees”; these are commonly known as program-related investments (PRIs). The Impact Capital fund will also fund partnerships, as the foundation has done in the past. Examples include NCB Capital Impact—for the Green House Project, a model of care for elderly people—and the Corporation for Supportive Housing. [Read the GrantWatch article on the Corporation for Supportive Housing.]

Updates on RWJF’s Seven Program Areas

Lavizzo-Mourey mentioned the importance of the Affordable Care Act. She noted that most implementation action is going to be in the states. Also, the results of the November elections mean that the RWJF’s work on six areas of interest it shares with the Accountable Care Act, such as health coverage for the uninsured, reducing spending on health care, and strengthening public health, should occur in the states.

She highlighted a number of outcomes of RWJF funding (or cofunding) and launchings of new efforts. Here are some examples grouped by RWJF funding area:

Coverage

* “The Cost of Failure to Enact Health Reform: 2010–2020” an Urban Institute paper on federal reform (March).

*Uninsured Children: Who Are They and Where Do They Live? an Urban Institute chart book (August).

Childhood Obesity

*Fast Food FACTS: Evaluating Fast-Food Nutrition and Marketing to Youth, “the most comprehensive study ever conducted on fast-food nutrition and marketing to children,” Lavizzo-Mourey said. This November report by Yale University’s Rudd Center for Food Policy and Obesity was revised in December.

Quality/Equality

*Fourteen of the seventeen communities participating in the RWJF’s Aligning Forces for Quality (AF4Q) initiative “have now publicly reported evidence-based measures of quality for physician practices,” Lavizzo-Mourey said.

*AF4Q recently launched its Hospital Quality Network.

[Excuse the shameless promotion of GrantWatch here—Read two GrantWatch articles on the AF4Q initiative: “Aligning Forces for Quality: A Program to Improve Health and Health Care in Communities across the United States” by Mike Painter and Risa Lavizzo-Mourey (Sep/Oct 2008 commentary) and “Early Experiences with Consumer Engagement Initiative to Improve Chronic Care,” by Bob Hurley and coauthors (January 2009 Report).]

Human Capital

*The Future of Nursing: Leading Change, Advancing Health, Institute of Medicine (IOM) report, released in October.

*In November the RWJF Initiative on the Future of Nursing launched a Campaign for Action to implement the recommendations in that IOM report.

*Successful Community-Based Dental Education Programs and Underrepresented Minority Dental Student Recruitment and Enrollment Programs, a supplement to the October issue of the Journal of Dental Education. This report looks at lessons learned by the RWJF’s Pipeline, Profession, and Practice: Community-Based Dental Education (Dental Pipeline) program. The RWJF implemented the program (which concluded this past summer) at twenty-three dental schools around the United States. (Note: The Dental Pipeline program was a partnership among the RWJF, the California Endowment, and the W.K. Kellogg Foundation.)

Vulnerable Populations

*RWJF grantee CeaseFire was featured recently on ABC-TV’s Nightline; the subject was violence in Chicago. The network “positioned violence as a public health issue,” Lavizzo-Mourey said.

*A New Way to Talk about the Social Determinants of Health. This phrase means the effects “of where we live, work, learn and play” on health, she explained. This report is a welcome resource to help people understand this somewhat inaccessible phrase!

Pioneer (Portfolio)

*At the October 2010 TEDMED conference, the RWJF convened a group of grantees and “other innovators”— those it refers to as the “Pioneer 50.” This conference was to celebrate “conversations that demonstrate the intersection and connections between all things medical and healthcare related: from personal health to public health, devices to design and Hollywood to the hospital,” the conference website says. The RWJF and the California Endowment are among the event’s major sponsors.

*The October 2010 issue of the Journal of Biomedical Informatics contains “key lessons” from the RWJF’s Project HealthDesign and results from its first round of grants on health information technology (IT). For example, Lavizzo-Mourey said, that journal describes “a cell-phone-enabled medication management system to alert kids with cystic fibrosis to take [their] medicine.”

Public Health

*The November 2010 issue of Preventing Chronic Disease: Public Health Research, Practice and Policy, a journal published by the Centers for Disease Control and Prevention, contains a set of essays, commissioned by the University of Wisconsin/RWJF Mobilizing Action Toward Community Health (MATCH) initiative, on partnerships for improving community health. County Health Rankings, released in February, is a key component of MATCH; the rankings “have impelled local officials to change their jurisdiction’s health trajectories,” Lavizzo-Mourey stated in her letter.

*The Public Health Law Network was launched. (See the November 2010 GrantWatch Outcomes column, which describes this effort.)

Concluding remarks: Risa Lavizzo-Mourey on social media

She noted, “I am a firm believer in the power of social media as a tool to engage more deeply, consistently and transparently” with stakeholders “in our common mission of improving health and health care.” She added, “We have encouraged our staff, our grantees and our colleagues and partners to participate professionally” on blogs, Twitter, Facebook, and YouTube, not because they are the latest trendy things, but because they are efficient “tools to share, get feedback, refine and improve and connect with wider and often more consequential audiences and potential partners, in real time.”

Read more of Lavizzo-Mourey’s letter here. She invited readers to follow her on Twitter.

More than 30 million uninsured people will acquire either public or private insurance over the next five years as a result of the Affordable Care Act of 2010. What does this mean for foundations promoting healthier communities by investing in increased access to health care? In short, it means new opportunities, especially for foundations that act now.

Historically, the choices in access to care have been limited. Because many uninsured people couldn’t afford to pay anything for health care, foundations were often limited to funding free clinics or creating volunteer initiatives. This created two problems.

The first was that these programs seldom had the capacity to serve many people. They were often overwhelmed by the sheer volume of need. The second was that they had no sustained source of funding. Unless the foundation was willing to give indefinitely, many of the programs didn’t survive.

Through health reform, Congress has focused on one side of the equation. Adding to the insurance rolls means that more people will be able to pay for the care they receive. Foundations can now focus on the other side—ensuring that providers will be available to give those patients the care they need.

Here are four things they can do to accomplish this.

First, foundations can provide seed funding for new and expanded Federally Qualified Health Centers (FQHCs).

FQHCs receive favorable Medicaid and Medicare provider reimbursement rates, discounted drugs, access to federal grants, and a number of other benefits that sustain them once they’re operational. They offer high-quality primary care to everyone regardless of ability to pay. Nationally, they already serve 20 million people annually.

We will need many more FQHCs in the near future. Health reform will put nearly all families with annual incomes under $30,000—totaling 17 million more people—onto Medicaid in 2014. FQHCs will become the primary care provider of choice for many of these people. Congress anticipated this by including additional funding for FQHCs in the reform legislation, but more can be done.

State and local foundations don’t have to wait for current providers in their geographic areas to be inundated to respond. They can put dollars in FQHC start-up funds now so that there is sufficient capacity when their communities need it two or three years down the road. National foundations can support the National Association of Community Health Centers to provide training and technical assistance to these centers to help them to bring new services online.

Second, foundations can fund programs that integrate the activities of primary care providers, specialty care providers, and pharmacists.

A large number of Americans—more than 100 million—now live with one or more chronic conditions that require ongoing treatment, medication, and monitoring. These conditions include hypertension, back pain, mental illness, asthma, diabetes, cardiovascular diseases, cancer, and HIV/AIDS.

A generation or two ago, long-term care was almost entirely about serving the elderly in nursing homes. Now, it’s mostly about managing chronic conditions in community-based settings—such as adult day care or outpatient programs—and at home, and all age groups are well represented.

Some of the tools and activities of health reform, including cross-training in primary and specialty care, algorithms that help providers choose the most effective medication(s) or combinations of medications to meet a given patient’s needs, and shared electronic health records, will make care coordination easier.

The provisions promoting this kind of integration in the health reform law are relatively modest, but they send a strong signal about the direction in which public policy is heading.

Foundations that commit resources to programs integrating primary, specialty, and pharmacy care will be leaders in this area. They will also achieve another valuable result: Up to half the people who enter hospital emergency rooms (ERs) on any given day don’t need to be there, so integrating community-based care by linking or bundling primary and specialty care can keep them out of ERs by helping them manage their chronic conditions more effectively.

Third, foundations can fund local training programs for allied health professionals, outreach workers, and community paraprofessionals.

Health reform will create millions of new job openings in health care. Many jobs will be available to well-trained entry-level workers, including home health aides, personal care assistants, and care coordinators.

The bad news is that we’ll have shortages of these workers to add to our shortages of nurses and primary care doctors. The good news is that more can be trained in low-cost programs in high schools and community colleges. These educational institutions can make good use of foundation dollars to train local people for jobs in their own communities.

Fourth, foundations can invest more heavily in public health activities that provide access to wellness as well as access to care.

In the 1990s the U.S. Department of Health and Human Services (HHS) estimated that 97 percent of our health resources were consumed in treatment versus 3 percent in prevention. If anything, the ratio is probably worse today. Yet, wellness and prevention probably account for at least half of improved health status in the United States over the past century. Environmental and population-based health programs—including immunization, fluoridation of water, sewer systems, and air pollution control—achieved some of the best results for the money in the twentieth century.

A very large part of the U.S. economy is driven by health care. As was the case with health reform, Congress may always have to focus most on where most of the money goes. Foundations, however, are uniquely positioned to focus on results. Opportunities are knocking. Foundations just have to open the door.

The author is a former president of the Quantum Foundation, in West Palm Beach, Florida. He is now an independent consultant and recently started his own blog, Our Health Policy Matters.

Grantmakers In Health’s (GIH’s) Fall Forum, held in November in Washington, DC, at the landmark Omni Shoreham Hotel, focused on women’s health. Here are some highlights.

Alina Salganicoff of the Henry J. Kaiser Family Foundation’s Menlo Park office mentioned some notable figures in the history of women’s health, such as the first lesbian TV character, who appeared on the ABC-TV soap opera All My Children; Louise Brown, the first test tube baby; and Antonia Novello, the first woman surgeon general of the United States, appointed during the George H.W. Bush administration. She also mentioned enactment of the federal Family and Medical Leave Act of 1993 and a recent Institute of Medicine (IOM) report called Women’s Health Research: Progress, Pitfalls, and Promise.Salganicoff also provided some statistics and factoids about women’s health—for example, as women age, having a healthy weight is less likely. Not what women want to hear!

Citing 2006 Kaiser data, Salganicoff noted that women constitute the majority of the long-term care population. She also discussed various aspects of reproductive health; for example, she commented that there is an increased use of assisted reproductive technologies, but a question remains, she said, as to how much promise they hold for most women with fertility problems. Looking ahead, Salganicoff said that this is a time of renewed interest in women’s health at the federal level, with agencies such as the National Institutes of Health (NIH) and the Agency for Health Care Research and Quality (AHRQ) putting women’s health back on their radar screens.

In response to an audience question about what foundations can do, Salganicoff commented that how foundations think about and fund women’s health is often “fragmented” and “siloed” (with some funders focusing on reproductive health, others on low-income access to care issues, and others on specific disease concerns, and few integrating all of these key issues, she explained to me later). To give women’s health issues more prominence, she suggested that funders consider whether many of the different projects that they fund can be further shaped to focus on how the projects affect women.

View Salganicoff’s PowerPoints prepared for her GIH presentation for much more information.

Sandra Steingraber, an ecologist and author, was another of the speakers. Her topic was “Environmental Factors and Women’s Health.” Steingraber’s mother was diagnosed with breast cancer at age forty-four, and Steingraber herself had bladder cancer when she was twenty. She mentioned the risks of chemicals such as PCBs and DDT; air pollution; and gas fumes from combustion.

Steingraber commented that when disease runs in families, people presume that the culprit is genes, but it “may be the environment.” Paula Johnson, a physician at Brigham and Women’s Hospital in Boston and another speaker at the forum, asked about women who work in salons—what about their exposure to toxins? Steingraber reported that chemicals in nail polish have been linked with pregnancy loss. She added that women who work in the dry-cleaning industry are exposed to perchloroethylene, which has been linked to bladder cancer. And when you get your dry cleaning home, unfortunately, you can breathe perchloroethylene in your bedroom. Steingraber gave attendees some things to worry about in their daily lives!

Len McNally of the New York Community Trust commented that oncologists seem skeptical about chemicals and the incidence of cancer. Steingraber said that they are “busy doctors” who haven’t “kept current” on this topic. Physicians in pediatrics are more open to the ideas of environmental influences. She also stated that county health departments need to get up to date on “state-of-the-art investigations” of environmental influences on health; good cancer registry data are available, she commented. Also, Steingraber said, hospitals have a big responsibility to serve healthful food to their patients.

Thank you much to presenter Jody Heymann for her thoughtful corrections and clarifications on Dec. 12 to what I originally posted on Dec. 9.  Modified highlights of her remarks follow, along with an additional paragraph!

Jody Heymann of McGill University, in Montreal, an internationally renowned researcher, spoke on how women’s working conditions affect their health and the health of their families. She first focused on the question of “why does paid sick leave matter?” She said sick leave reduces the duration of illness and its cost; decreases the spread of illness in the workplace; and decreases the amount of illness spread to those customers served in the workplace. (She later mentioned some food for thought: Do restaurants have paid sick leave? I think she wanted the audience to think about that before dining out!) Although most countries around the world ensure paid sick leave, the United States does not, she stated.

Next Heymann discussed “Why does maternity leave matter?” She said that that it improves women’s and children’s health outcomes and women’s long-term earnings. Again, the United States does not ensure paid maternity leave. Employers’ argument against providing such paid leave is lack of affordability. However, Heymann demonstrated its affordability across a wide range of competitive countries. She also discussed leave (from work) to care for the health needs of children and the elderly. While benefiting men and women, this type of leave “disproportionately benefits women,” she said. One example of why that leave is helpful is that parents play a “vital role” if their child is in the hospital (and, thus, they need time off to be with the child).

A forum attendee asked what the role of philanthropy should be in such matters—when women seem to be “penalized for having babies”? Heymann said that philanthropy can help gather evidence on what women and families need and what policies and programs work, and help the public and private sectors understand and grapple with the issues.

Salganicoff noted that California does require “paid family leave around disability” (which includes maternity leave) and San Francisco has a mandatory sick leave policy.

Another attendee asked: Who pays for all of this leave? Heymann said employers often can afford to provide short-term paid sick days (half of U.S. companies, she said, already provide it). In most countries, longer-term paid sick leave and paid parental leave is funded by social insurance—a successful model used by many countries. 

View Heymann’s PowerPoint slides prepared for her GIH presentation. 

At another forum session, Elizabeth Barajas-Roman of the National Latina Institute for Reproductive Health and Maricela Mares-Alatorrre of El Pueblo/People for Clean Air and Water spoke about their advocacy efforts. Vanessa Daniel of the Groundswell Fund moderated the discussion. Mares-Alatorre, for example, mentioned the successful efforts of her parents and others to keep an incinerator from being installed near the farming area of California where she grew up. Her parents cofounded El Pueblo/People for Clean Air and Water, based in Kettleman City, California, and she is now a spokesperson for the organization.

Faith Mitchell of GIH planned and coordinated the forum, which was funded by the Jennifer Altman, Morris and Gwendolyn Cafritz, California Wellness, Ford, and Johnson Family Foundations; the Commonwealth Fund; the Missouri Foundation for Health; the Maternal and Child Health Bureau of the federal government’s Health Resources and Services Administration (HRSA); and an unspecified donor.

Related resources:

“Critical Care: Women and Minorities Have Been Overlooked by the Health System, but What Can We Do?” Boston Globe, Dec. 5. These edited excerpts are from an interview conducted by Diversity Boston editor Kortney Stringer. GIH forum speaker and physician Paula Johnson is one of the interviewees.

Realizing Health Reform’s Potential: Women and the Affordable Care Act of 2010,Sara R. Collins, Sheila D. Rustgi, and Michelle M. Doty, released July 30. Funded by the Commonwealth Fund.

In commemoration of World AIDS Day, which was earlier this week, I list here some items on HIV/AIDS that have come across my desk. You may want to check them out.

New Report:

U.S. Philanthropic Support to Address HIV/AIDS in 2009, Funders Concerned About AIDS (FCAA), released Nov.16. The Ford Foundation and UNAIDS provided funding and in-kind support for this report. Mostly because of the effect of a decrease in HIV/AIDS funding by the Bill and Melinda Gates Foundation (from $378 million in 2008 to $334 million in 2009—still nothing to sneeze at!), total funding to address HIV/AIDS by philanthropies based in the United States decreased by 5 percent during that period. “This is the first year since FCAA began tracking disbursements (in 2005)” that that total decreased, the report says. Disbursements from all other funders based in the United States increased from 2008 to 2009, however.

Like to look at lists ranking funders? This report has some good ones, such as “Top 67 U.S. HIV/AIDS Funders in 2009” (Leading the list are the Bill and Melinda Gates Foundation and the Ford Foundation); “Top U.S. Corporate HIV/AIDS Funders in 2009” (The top two are the Abbott and Abbott Fund and Merck); and “U.S. HIV/AIDS Funders Disbursing $1,000,000 or More to HIV/AIDS Projects Outside of the U.S. in 2009” (As you might guess, the Gates Foundation leads that pack by a long shot, followed by the Abbott and Abbott Fund). The report notes that the Gates Foundation “alone accounts for 57% of all disbursements” for HIV/AIDS from United States–based philanthropy in 2009. The report explains that data from a few funders, including the Henry J. Kaiser Family Foundation, are not included in the report; in Kaiser’s case, this is because it is an operating (non-grant-making) foundation “that develops and runs its own policy research and communications programs, which are increasingly difficult to value financially.”

The report also contains a spotlight on an FCAA event held in October in Oakland, California, and sponsored by the MAC AIDS Fund (affiliated with MAC Cosmetics) and Northern California Grantmakers, on the topic of state budget cuts effects’ on HIV/AIDS programs around the country. The publication also describes the work of the Elton John AIDS Foundation (which is not a private foundation, but a 501(c)(3) charity).

Click here (FCAA’s Resource Tracking Toolkit) for other materials related to the FCAA report.

FCAA 2010 AIDS Philanthropy Summit

Read about it here. Click here to register for this Dec. 6 event to be held in Washington, D.C. “Registration is limited to funders and invited presenters,” FCAA says.

Job Opening

Are you looking for a job? I read on the FCAA website that the Levi Strauss Foundation has an opening for a program manager covering Europe, the Middle East, and Africa. The position is based in Brussels, Belgium. Read more here. Note that HIV/AIDS is just one of the issues that the foundation funds. The deadline for applying is Jan. 3.

Related resources:

“Funding Cuts on Horizon for Global Health, AIDS,” Matthew O. Berger, IPS—Inter Press Service, Nov. 17. Berger mentions the new emphasis in Washington on decreasing government spending. There are many unknowns, “but it is widely expected that there would be steep cuts to HIV/AIDS programmes and research—as well as other areas of global health and foreign assistance funding,” he says.

Health Affairs, November/December 2009 issue, an issue with a cluster of articles on Meeting HIV/AIDS Costs.

“HIV/AIDS in the U.S. ‘Worse than Most Perceive,’” Keosha Johnson, in CommonHealth blog, Nov. 10. Read an interview with Tony Fauci, who directs the National Institute of Allergy and Infectious Diseases, part of the National Institutes of Health (NIH). Two former newspaper journalists host CommonHealth blog: Carey Goldberg, former Boston bureau chief for the New York Times, and Rachel Zimmerman, former health and medicine reporter for the Wall Street Journal. The blog, which focuses largely on Massachusetts, is based at WBUR, Boston’s National Public Radio (NPR) station, and “sponsored by NPR central,” Goldberg told me.

“Leveraging the Power of the Media to Combat HIV/AIDS” (free access), by Matt James, Tina Hoff, Julia Davis, and Robert Graham of the Kaiser Family Foundation, Health Affairs, May/June 2005. This GrantWatch article describes some of the foundation’s work in HIV/AIDS .

“On World AIDS Day: Progress, but There’s ‘So Much of It Out There,’” Mark Memmot, on the Two-Way (NPR’s News Blog), Dec. 1. NPR’s Richard Knox, referring to HIV/AIDS, says, “For every person who’s put on treatment, two more people are getting infected.” Listen to the audio.

End-of-life care presents emotional, physical, and financial burdens for patients and their loved ones. At the Jewish Healthcare Foundation (JHF), in Pittsburgh, we have become somewhat fixated on the fact that the health care system too often fails families and patients at end of life. Unfortunately, failure is what most people expect. But JHF end-of-life initiatives in the Pittsburgh area are showing that better realities are possible.

Recently, the Dartmouth Atlas Project released its first-ever report on cancer care at end of life, which showed that one in three Medicare cancer patients spends his or her final days in hospitals and intensive care units (ICUs), an indication that many clinical teams aggressively and often futilely treat patients with curative care close to the times of their deaths. The report suggests that we are underutilizing hospice and palliative care, which receive high marks from families and patients at end of life.

We know from research that there is no correlation between intensity of medical services delivered during end stages and patient and family satisfaction. Almost always, the inverse is true. When patients spend more time in an ICU during their final stages of life, families report more inadequacies in (1) emotional support, (2) shared decision making with their medical team, and (3) information on what to expect, and a greater lack of respect and lower overall satisfaction.

The Pittsburgh community did not fare well in this report. In general, patients are overtreated and undersupported. This was not a surprise. Through a JHF-supported initiative, Closure, we had already heard stories directly from patients and families that brought the Dartmouth numbers to life.

Through Closure, we brought— and continue to bring—together groups of thirty or so community members, including health professionals of all stripes (clergy, professional care providers, insurers, and the group often left out of the conversation—family caregivers). Through a six-part series of facilitated discussions, we address topics such as values, the health care system, legal considerations, grief, and the caregiver journey.

What exactly do we hear from our Closure participants? Many said that death was seen by health care providers as a failure, not an acceptable or expected outcome. Families reported being pressed for decisions in moments of “acute terror.” While providers and policy makers focus on the interventions and their costs, families experience end-of-life differently–over time and in multiple sites, often beginning before a real diagnosis is made and stretching far beyond the final medical intervention into the grieving process. During this stressful experience, the tendency is that few health care professionals talk to patients and families about their wishes for their end of life and what care they want. Plans are made around the patient and family, not with them; the interventions just keep coming. Options are not presented early or clearly enough to be helpful or meaningful. Even within families, conversations about what path a patient would want to take occur too late, or not at all.

The Closure initiative has been and continues to be an effort that is both very meaningful and worthy of investments of time and money by the JHF and others within the Pittsburgh community. We have identified gaps—in health care providers’ practice, training, and understanding, and in state and federal policy on payment and other issues—that impede informed decision making, good care, and appropriate uses of resources. We are focused now on developing resources to support patients, families, and health care providers: online education, advance-planning aids, and strategic partnerships.

But there is still a major hurdle to overcome: silence. No one thinks that anyone is really eager to talk about “it”–that is, about the end of life. In fact, many do want to talk about it, but conversations require at least two willing parties. Whether and how well we are able to address this issue (for example, through establishment of community systems and supports) will determine outcomes for families and will impact our health care systems. It is not an easy conversation to start or to have–personally, professionally, or politically. But avoidance of the issue–the easy but unfortunate status quo–doesn’t seem to be working very well for anyone.

To help further conversations about end-of-life issues, the JHF in partnership with our local Public Broadcasting Service (PBS) station, WQED-TV, is producing an original one-hour documentary, “Promoting Community Conversations at End of Life,” and, in partnership with ­Creative Non-Fiction, a literary journal with a national outreach, the JHF is publishing a special edition of short stories. We expect both projects will be completed next year. The goal is to demystify many of the concepts and issues at end of life and allow community members the chance to think about their own preferences and learn about opportunities to have their care and healing needs heard and respected. If we can get the general public talking, will we be ready to help facilitate those conversations and to listen? In Pittsburgh, we are getting ready.