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A sad day

Since I’m about to get political – something I very selectively do on this blog so as not to distract the dialog from the issues surrounding living with HPS – I want to stress, once again, this is my personal blog.

Disclaimer out of the way, Monday was a shameful day at the White House. Monday President Bush vetoed the Health and Human Services Appropriations Bill. This is the bill that provides federal funding for things such as the National Institutes of Health, Medicare, Medicaid and community health centers. For months both the House and the Senate have worked hard to reach a compromise on this bill. In fact, many Republicans and Democrats came together to support the funding increases outlined in this legislation. But, their efforts right now are shy of overriding today’s veto. I hope that good conscience prevails and enough support for an override is mustered.

I’ve said this before on this blog, and I’ll say it again – were it not for the NIH there would likely be almost no clinical research on HPS. NIH is a unique institution. Because it’s a government institution, it does not survive at the mercy of corporations or fundraising or insurance companies. It’s that structure that allows the NIH to do research no one else might tackle because of the apparent lack of commercial application. That doesn’t mean that in the end the research isn’t terribly important.

HPS research is the perfect example. We are too rare, and too poor, to be able to do our research anywhere else. The NIH has spent millions on HPS research – but not just to benefit the few people with HPS. What they are learning from us will also benefit the 128,000 people with other types of pulmonary fibrosis as well as the several million people in the United States that suffer from Crohn’s disease. Yet our contribution to science would have been lost without an institution like NIH.
And then there’s the Medicare, Medicaid and community health center funding. I think President Bush should spend a day at the HPS Network before being so quick to cut the budgets of these programs. Perhaps he should have a conversation with someone suffering in a lot of pain from an HPS/Crohn’s related complication, but who is unable to afford treatments like Remicade or Humera because Medicaid funding was cut and these drugs are too expensive to be covered. Or maybe he should talk to some of our members who have no insurance and rely on community health centers for the most basic of care. Or maybe he should talk to someone who is still very young, but can’t get a lung transplant for lack of insurance that will cover the procedure. And we’re not even touching the surface of people like me who do have insurance, but who often pay as much as a fourth of our income in co-pays for doctors and medications thanks to chronic health issues.

We enjoy a lot of luxuries as Americans. We live in a great country. But, if you’re too sick to participate in life, or worse, you’ve died from preventable complications to disease – what difference does all that make?

President Bush must not understand how desperate the need is out on the frontlines of America – especially for those of us with disabilities or chronic illnesses. Frankly, it’s been something that bugged me about him every since he was a candidate. He just doesn’t get it.

It wouldn’t be fair, however, to not wag a finger at both sides of the Congressional aisle on one respect. Part of the flap is over the age old issue of “pork.” One man’s pork is another man’s urgently needed federal program. But, at a certain level our leaders need to recognize the profound crises that face our country – from security to health care – and get over their pettiness to step up and offer real leadership. For some of us, it really is a matter of life and death. But, Lord knows I’m not the first person to suggest that.

Below is an article that ran in the American Medical News several days ago before the veto. Even though it’s a tad old, I’m including it because it’s a very good look at the programs affected by this bill. I strongly urge you to click through to see the actual article because there’s a wonderful chart at the end that makes it easy to compare the different budget requests.


Senate passes HHS budget bill, defies Bush spending targets

The compromise anticipated between similar House and Senate spending bills is expected to cause a showdown with the president.

By
Doug Trapp, AMNews staff. Nov. 12, 2007.

Washington -- Community health centers, medical researchers and medical students would benefit from a fiscal 2008 Dept. of Health and Human Services budget passed by the Senate. But Congress must gather enough votes to override a threatened veto.

The Senate adopted a $479 billion HHS appropriations bill 75-19 on Oct. 23, easily achieving a two-thirds, veto-proof majority with the help of 29 Republicans. The House passed a similar $472 billion HHS budget in mid-July by a vote of 276-140 -- short of a veto-proof level, despite the support of 53 Republicans.

The House and Senate were expected to release a compromise HHS bill this month.
The Senate measure generally resembles the House version. Both would boost funding to the National Institutes of Health, prevent the president's proposed virtual elimination of the Title VII medical education loan program and increase federal community health center funding.

The president's 2008 budget proposal would reduce Title VII medical student loan assistance to $10 million from $184.7 million in 2007 and would freeze funding for community health centers at $1.99 billion. It proposes reducing the National Institutes of Health budget by $310 million (2%).

The Senate budget measure would head in the other direction. It would add $5 million (2.7%) to Title VII and $250 million (12.5%) for community health centers. It would boost NIH funding by $1 billion (3.5%).

The health center increase would allow facilities to see nearly 2 million more patients, according to Dan Hawkins, senior vice president for programs and policy at
the National Assn. of Community Health Centers.

"This bill will continue the vital expansion of health centers into more medically underserved communities across the country," he said.

The NIH increase would pay for an additional 400 grants, compared with fiscal 2007 and 700 more than the president's budget.

Even the Senate bill's increase wouldn't keep pace with today's biomedical inflation rate of 3.7%. The NIH needs $1.9 billion (6.7%) annual increases from 2008 to 2010 to restore it to the spending ability it had in 2002 before a series of flat budgets, said Jon Retzlaff, director of legislative relations for the Federation of American Societies for Experimental Biology.

However, it has been clear for months that the NIH wouldn't see that kind of increase this year, Retzlaff said. FASEB has been campaigning to keep NIH from suffering cuts so that more medical researchers can avoid shutting down their operations.

"[Researchers] just can't do much more other than keeping things going," Retzlaff said.

The president has threatened to veto 10 of the 12 spending bills to fund the federal government for the next fiscal year -- including the House and Senate versions of the HHS measure -- because they exceed his 2008 requested spending by a combined total of more than $20 billion.

This disagreement between Bush and the Democratic-led Congress epitomizes their increasingly frosty relationship. Bush criticized Congress for not sending a single appropriations bill to him before Oct. 26, which he said hasn't happened in 20 years.
The House adopted all 12 appropriations bills by the end of July, but the Senate has been months behind in its work.

Bush also took aim at Democrats for not working in a more bipartisan manner on the State Children's Health Insurance Program reauthorization. "Congress needs to keep their promise, to stop wasting time, and get essential work done on behalf of the American people," the president said.

Democrats, such as Rep. David Obey (D, Wis.), chair of the House Appropriations Committee, chastised Bush for requesting $200 billion for the wars in Iraq and Afghanistan while drawing a hard line on other spending. "It's amazing to me that the president expects to be taken seriously when he says we cannot afford $20 billion in investments in education, health, law enforcement and science," Obey said.

Sen. Tom Harkin (D, Iowa), chair of the Senate Appropriations subcommittee on health, noted the final Senate HHS bill didn't include a provision in the original measure supporting stem cell research that the president would have opposed.
"I remain hopeful that the president will back away from his preemptive veto threat, consider the substance of the bill and listen to the better angels of his nature," he said.

Democrats have their legislative work cut out for them as the year draws to a close.
Their resolution funding the federal government expires Nov. 16 and needs to be extended if the appropriations bills aren't finished.

While Bush criticized Congress for excessive spending, Democrats characterized the House and Senate HHS bills as an attempt to keep nearly all discretionary spending from going to the military and security programs.

Bush proposed increasing funding for defense, homeland security, international affairs, military construction and veterans affairs by $60.2 billion (11.3%) in 2008, according to the Assn. of American Medical Colleges. At the same time the president called for restricting funding of all other domestic discretionary programs.

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