Letters We Didn't Finish Reading, Healthcare Reform Division

The following just hit my in box, apparently because there are folks out there who think I am among those who would rather bask in idealistic purity than see my government actually get something done.

Donald,

As you probably know, the White House and Democratic Senate leaders caved to Joe Lieberman and took both the public health insurance option and Medicare expansion out of the health care bill.

That means no competition and no choice -- just a bailout of billions of dollars to the same insurance companies that caused our health-care crisis in the first place.

We have one more chance to change this bill. Progressives in Congress can say they will block any bill without a public health insurance option. We'll deliver it to top progressive senators Bernie Sanders (VT), Al Franken (MN), Russ Feingold (WI), and Sherrod Brown (OH).

Without a public option, this bill doesn't change the structural, long-term problems with our health care system. Instead, it's a raw deal that the insurance companies love: mandating that millions of Americans buy their junk products.

All it takes is one hero.

If just one brave senator says they will block a final bill without a public option, that will force President Obama and Senator Harry Reid to make a choice. They can either force Joe Lieberman and other corporate Democrats to accept the public option OR they can pass the bill through "reconciliation," a Senate procedure that only needs 51 votes.

Joe Lieberman will become irrelevant -- and generations of Americans will thank the brave progressive Senator who fought for fundamental change.

All it takes is one -- one hero to step up and change history.

After you sign, can you please pass along to Democrats you know -- or folks who are mad and want to see real reform? We don't have a moment to lose.

Thanks for being a bold progressive. --Stephanie Taylor, Adam Green, Natasha Patel, Andrew Perez, Forrest Brown, and the PCCC team

A great letter about the potential end of Ignorance-Only Sexuality Education

January X, 2010

Dear President Obama and Congressional Leaders:

On behalf of the undersigned local, state, and national organizations committed to the health and well-being of our nation’s young people, we thank you for taking several steps toward properly promoting and funding programs that will improve sexual and reproductive health for young people across the country by passing and signing the Consolidated Appropriations Act of 2010. We commend you for following through with the elimination of funding for existing abstinence-only-until-marriage programs, funding more comprehensive approaches in Fiscal Year 2010, and placing the new teenage pregnancy prevention initiative under the newly funded Office of Adolescent Health (OAH) within the Office of the Secretary of Health and Human Services (HHS).

After more than 25 years and more than $1.5 billion of wasteful spending on ineffective abstinence-only-until-marriage programs, we commend you for taking the opportunity to meet the needs of young people by eliminating funding for harmful abstinence-only-until-marriage programs and shifting resources to evidence-based and comprehensive approaches to sex education. By crafting a program that includes information about both abstinence and contraception, you are finally dedicating funding to programs that address the root issues that help teens make responsible decisions and keep them safe and healthy.

We are also grateful that the new teenage pregnancy prevention initiative was funded at the level of $114.5 million. We are pleased that the final bill also places the new prevention initiative under the purview of the newly funded OAH. Directing that the program be a collaborative effort between HHS agencies including, but not limited to, the Administration for Children and Families (ACF) and the Centers for Disease Control and Prevention (CDC) will ensure that the new initiative will be invested in multiple agencies of HHS. We fully support this inter-departmental approach and look forward to working with all agencies involved to ensure that this program has the public health frame it requires and that young people across the country have access to the information they need to make safe, healthy, and responsible decisions. In addition to the placement of the new teenage pregnancy prevention initiative within OAH, we look forward to the possibilities that the funding of OAH can bring and look forward to continuing to work with you so that the interrelated health needs of adolescents can finally be adequately addressed.

The Administration and Congress acted in the best interest of young people by supporting public health and education policies that are comprehensive, rooted in the best science, and reflect mainstream values. However, we do think that by focusing the funding on teenage pregnancy prevention, and not including the equally important health issues of STIs and HIV, both the Administration and Congress missed an opportunity to provide true, comprehensive sex education that promotes healthy behaviors and relationships for all young people, including lesbian, gay, bisexual, and transgender youth. We are pleased with how far we came in the Consolidated Appropriations Act of 2010 and look forward to continuing to work with you in the coming year to create the strongest possible initiative that will meet the needs of all young people and will be sustainable in the long term.

If you would like any additional information, please do not hesitate to be in touch with Jen Heitel Yakush at the Sexuality Information and Education Council of the U.S. (SIECUS) at (202) 265-2405 or Marcela Howell at Advocates for Youth at (202) 419-3420.

Sincerely,

Advocates for Youth
Sexuality Information and Education Council of the U.S. (SIECUS)
[and, I hope, gazillions of other organizations that sign on by 1/8/09]

Cystic Fibrosis Newborn Screening: Mission Accomplished!

Here is a real occasion for dancing in the streets! Thanks to Texas, which began on December 1, every child born in the United States -- or at least every child born to responsible parents who cooperate with reasonable public health measures -- is now screened at birth for cystic fibrosis.

Maybe you think that's an arcane development, of interest only to people who wear white coats at work. Wrong!

After sickle cell disease, CF is the most common life-shortening inherited disorder in the U.S. (It is the most common one among people not of African-American descent.) CF kills people by causing permanent damage to their lungs. But a child who begins treatment at birth can take advantage of remarkable therapies -- inhaled antibiotics, etc. -- that are likely to mean the difference between a long life and a short life.

When I was living in New Hampshire a few years ago, I made a pain in the ass out of myself at the State House in an effort to get the Granite State to become one of the early states to adopt CF newborn screening. Among others, I told my family's story to lawmakers considering the required statutory change, and then again to lawmakers who were inexplicably blocking the rules that were promulgated to implement the statute.

What's our family's story? A couple of months with a "failure to thrive" newborn, literally starving to death for no apparent reason, until some smart person at Dartmouth Hitchcock Medical Center thought to do the simple test that confirms a patient has CF. "Failure to thrive" instantly changed to "thrive" with a prescription for enzyme pills (to treat the pancreatic insufficiency that is also a common CF-triggered problem).

We of course were lucky -- a child diagnosed at four months of age has suffered no real permanent setbacks. But it is heartbreaking to meet people who are dying from CF -- almost always, when you asked when they got their diagnosis, they report a miserable childhood with undiagnosed or even misdiagnosed CF symptoms. The parents of our friend Jonathan, who died of CF not long ago, actually asked the family pediatrician about CF and he told them testing for the disease was not indicated in their circumstances.

Good grief! That kind of suffering and heartbreak will soon be history. The credit doesn't belong with me -- it goes to people like Dennis Stokes, the pediatric pulmonologist who REALLY convinced New Hampshire's officials to opt for newborn CF screening. Legislators are polite and attentive to persistent parents but they actually listen to the healthcare experts in matters like these. (Dennis has since left Dartmouth-Hitchcock for Memphis, and boy do we miss having him as our daughter's CF doc.)

It is interesting to note that the Cystic Fibrosis Foundation, which has championed CF newborn screening alongside the national Centers for Disease Control and Prevention, has not yet issued a big press release celebrating this milestone. Perhaps the Foundation doesn't want to humiliate Texas as the last state to take this important step . . .?

Here is useful information from the Cystic Fibrosis Foundation about newborn screening. I remember Dr. Stokes telling legislators in New Hampshire that newborn screening would "revolutionize" CF care. Welcome to the revolution!