The U.S. Census Department announced yesterday that in 2008, 46.3 million Americans did not have health insurance, a “not significant” increase from the 45.7 million uninsured the year before. But dig a little deeper into the survey—and understand its limitations—and you’ll find that the 2009 Current Population Survey (CPS) actually provides a compelling snapshot of the country in recession. Besides the new data on the uninsured, the survey also includes information on household income (down 3.6% between 2007 and 2008) and the poverty rate (13.2%, up from 12.5% in 2007).

Taking a closer look at the data also reveals which populations are most likely to be uninsured and where the need for reform is felt most strongly. The Census survey finds that 1.6 million more adults lost their health coverage between 2007 and 2008. The opposite is true for children; expansions in CHIP and also increases in federal matching funds for Medicaid coverage for kids have left fewer vulnerable and uninsured.

“The good news for kids is that Medicaid and CHIP are absorbing some of the uninsured and that’s pretty amazing given many states’ economic problems,” says Genevieve Kenney, a Senior Fellow and health economist at the Urban Institute. But, she goes on to say, “For adults, the public programs aren’t really there to catch them. This reflects real gaps in the safety net.”

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September is Sickle Cell Disease Awareness Month and it would be hard to find a disease that could benefit more from a boost in public attention. Yes, advocates still organize walks through city streets to raise money and support for this, the nation’s most common inherited blood disorder. And over the years the post office has issued special stamps to help Americans remember that there are 72,000 or more people living with this debilitating disease.

Yet, despite the fact that some 2 million Americans, or 1 in 12 African Americans, carry the sickle cell trait and 2,000 babies are born each year with the disease, public and private funding for research, clinical trials and social programs has remained consistently low. Pharmaceutical companies have introduced no new drugs to treat sickle cell disease and the pipeline remains dry. Patients, mostly minorities and recent immigrants, face steep hurdles to receiving care. These obstacles include institutionalized racism, lack of insurance, language barriers and serious under-treatment of pain.

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It’s bad enough that Conservatives like Sarah Palin and Betsy McCaughey are spewing wild charges that the House health reform bill will lead to “death panels” and the premature demise of grandma. But what really gets me about these lies—so clearly aimed at frightening seniors and blocking all action on reform—is that they are being advanced in the supposed interest of protecting patients.

In McCaughey’s now legendary battle with Jon Stewart on the Daily Show she identified herself as a “patient advocate” (although most of us know her as a former Lieutenant Governor of New York, vociferous opponent of Clinton’s health care plan and a newly-resigned director of a medical device manufacturer.)

First a little background: I have been a journalist for over 20 years but recently returned to school to pursue a Master’s degree in Health Advocacy at Sarah Lawrence College. Graduates of this program go on to take a wide range of jobs; a sizable portion end up as patient advocates in hospitals, nursing homes and hospice organizations. These trained professionals value autonomy and respect for all patients first and foremost—rejecting the older, paternalistic model of medicine where the doctor always knows best.

In fact, a basic tenet of patient advocacy is making sure all patients have so-called advance directives—living wills, durable power of attorney, health proxies, and orders for life-sustaining treatment—to help guide their care. These advance directives, which are dynamic and can be amended as a patient’s condition changes, allow patients—or if they become incompetent, a designated loved one—to make meaningful choices about what kinds of care they receive.

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The pharmaceutical industry has been settling into its “good guy” role in recent days; first committing to $80 billion in cost savings over ten years to help defray the cost of health reform and then forking over $150 million to finance an ad campaign championing the administration’s plan. (Of course there was that slight fall from grace when it looked as if, in exchange, PhRMA had secured guarantees that Medicare would not be able to negotiate drug prices…click here for Maggie’s take on that.)

But what else can the industry do to help burnish its image with the American people? How about finally consenting to some common-sense limits on the barrage of prescription drug ads confronting consumers every time they turn on the TV or open a magazine? While a complete ban is probably not possible (in part because such a ban might violate the First Amendment) how about making prescription drug ads a lot more educational and a lot less like a hard sell for a new BMW?

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The seamy underside of the organ transplant business made the news recently when Levy-Izhak Rosenbaum, a Brooklyn businessman, was arrested on accusations of trying to broker the purchase of a kidney for $160,000.

That the organ shortage is so great in this country that people are resorting to buying and selling kidneys is not a surprise; it probably happens more than we know. That’s because some 102,640 patients are waiting for an organ donation in the United States, according to the United Network for Organ Sharing. More than 7,000 people died last year while they awaited kidneys, hearts, livers, lungs, and intestines.

The situation is particularly dire when it comes to kidneys. A sharp increase in diabetes rates in this country has fueled demand;  there are now more than 80,000 people on the official waiting list for a kidney transplant. Reports are that thousands of other patients–those that aren’t in bad enough condition to warrant a spot on the official list—could benefit from a kidney.

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The road to health care reform is peppered with landmines that threaten to derail passage of truly comprehensive legislation. Some of these landmines are predictable: cost projections that go beyond $1.6 billion; controversy over new taxes and a public plan; worries about rationing and a government-takeover of health insurance.

There are other, less obvious, issues that conservatives can use to ignite controversy. Abortion, which I’ve written about here, is one divisive issue that could delay progressive reform. Another potential deal-breaker is health coverage for immigrants—an issue that has simmered just below the surface for a while now. A recent move by legislators in Massachusetts to drop some immigrants from that state’s health care roll could be a harbinger of what’s to come in federal health reform efforts.

A New “Lesson” From Massachusetts

Here’s the background: Earlier this month, the Massachusetts legislature decided to drop state-subsidized health coverage for 30,000 legal immigrants—those who have green cards but have been residents for less than five years. Dropping the immigrants—non-disabled adults who are 18 to 65 years old—is expected to save the state $130 million next year. 

Some commentators both inside and outside the state tried to portray the immigrants as illegal aliens who were “freeloading” off the state for health benefits. In fact, they are documented, permanent residents who are able to work and live in our country legally. Like American citizens, they pay taxes and can join the military to fight our wars—many go on to become citizens.

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Do Americans view health care as a communal resource that should benefit everyone or do they view it mainly from the standpoint of “what’s in it for me”? Do they view themselves as citizens, working together for a “greater good,” or as patients and consumers of health care; worried about retaining access to all that medicine has to offer?

The answer, according to a recent article by David Nather in Congressional Quarterly, is that most Americans are aware that “[w]hat’s good for the health care system as a whole often looks very different when it’s their own health at stake, or the health of someone in their family.”

Because the public is worried about sacrifices they may have to make to further the “public good,” Nather writes that Obama’s biggest challenge in maintaining support for health care reform will be to make sure that “Americans don’t think they will personally lose out in an overhaul of the way medical services are delivered—through higher costs to themselves, lower quality of care or simply inability to get the care they’re convinced they need.”

Nather says that in his speeches at town hall meetings and talks around the country, Obama is focusing too much on discussions about the financial aspects of health reform and on the benefits for all that will result from slowing spending on health care:

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Here we go again. Do you remember that fine spring morning when President Obama stood in front of the graduation crowd at Notre Dame and spoke of finding “common ground” between foes and supporters of reproductive choice. Abortion politics have reared up again, this time threatening to derail health reform legislation as we eke ever closer to the finish line.

In a move clearly meant to scorch that newly fertile “common ground,” nineteen House Democrats recently sent a letter to House Speaker Nancy Pelosi warning that they would vote against any health care reform plan that included abortion as a covered procedure—either through a mandate or even through a recommendation for coverage.

Here’s an excerpt from the letter which can be found in full here:

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There’s powerful storytelling going on over at Obama’s grassroots website, Organizing for America,  and clearly the goal is to use gripping narrative to get Americans to stop thinking about health care reform and start feeling the need for change. The newest addition to this site is called “Health Care Stories for America” and it includes a neat, interactive map of the U.S. that is constantly updating with new stories of health care woe from real people across the country. Site visitors can click on a megaphone at the bottom of a story they like to help promote its status and increase the anecdote’s chance of being pegged on the interactive map.

Here is an excerpt from a highly rated story from “Barbara” in Wocester, MA who was faced with $65,000 in medical bills when her insurer denied coverage after her son was in a serious bicycle accident:

“It's the phone call in the middle of the night that no parent ever wants to receive. Your son, a student at George Washington University, has been taken by ambulance to the emergency room. The doctor on the other end of the line explains, as you desperately wake-up into the nightmare, that in a bicycle accident your child has landed on his jaw, has broken almost all the bones in his face and has lost many teeth. He's lucky; there was no spinal damage, no brain injury, no eye involvement, and he's alive. But even after 5 hours of surgery, and 8 titanium plates installed into his face, you are told that reconstruction and recovery will take a year. Somehow your son gets through the long hospitalization, and the trauma. But there is no preparation for the next phone call: all further medical treatment is being denied by your insurance company.”

The Obama campaign plans to use stories from this site as the President conducts his “listening tour” around America to garner local support for his health plan and other issues that include energy policy and his Supreme Court nominee. Tomorrow alone, there are public meetings scheduled for several cities in New Hampshire, South Carolina and North Carolina. They will continue throughout the month of July as Congress remains in recess.

The use of anecdotes to influence health policy is not new; both sides used the technique during the 1993 battle over Clinton’s health plan. (The main difference being that conservative opponents used a fictitious couple—Harry and Louise—to act out a fictitious dilemma to make their point.)

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Drug companies have been allowed to introduce generic versions of traditional pharmaceuticals since 1984—saving the U.S. health care system an estimated $734 billion over the last ten years alone. But there currently is no regulatory pathway for creating generic versions of “biologics”. Unlike traditional, small-molecule pharmaceuticals, biologics such as  Avastin, a drug used to treat cancer, are protein-based and include monoclonal antibodies, growth factors, immune modulators and other molecules that are derived from living matter or manufactured by cells. Currently, brand-name biologics account for approximately 15 percent of total U.S. prescription drug sales—and they are growing in importance.

Little wonder that President Obama is determined to try to bring generic biologics to market.

Why don’t we already have generic versions of these popular drugs? One reason cited for the holdup is that biologics are more complex than small-molecule drugs and that it’s virtually impossible to create an exact replica (a so-called bioequivalent) of a pioneer biologic drug. The “follow-on” version of a biologic can be very similar to the branded drug but it might be manufactured a bit differently or might have slightly different side effects in certain patients. That means the approval process for follow-on biologics will involve more testing than is normally done for generic versions of small molecule drugs like antidepressants or heart drugs.

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