George Will Column yesterday

[carolyn]

George Will had an excellent column yesterday regarding abortion, perfectionism and the medical community. Here is the link:


www.washingtonpost.com/wp-dyn/articles/A51671-2005Apr13.html

[wrblack]

Thanks for the alert. I just used it in a post/email elsewhere and to others. To wit, << Subject: Prenatally Diagnosed Condition Awareness Act
Comments: To: [e-mail]
Comments: cc: [e-mail], [e-mail]
Content-Type: text/plain; charset="us-ascii"

Both Dr. Leshin's Down syndrome abstract of the month, www.ds-health.com/abst/a0504.htm , and George Will's op-ed column of today in the Washington Post, www.washingtonpost.com/wp-dyn/articles/A51671-2005Apr13.html , make reference to the bill introduced in the Senate by senators Brownback and Kennedy, frwebgate.access.gpo.gov/cgi-bin/getdoc.cgi?dbname=109_cong_bills&docid=f:s609is.txt.pdf I think both are worth reading.
Even though NDSS and NDSC issued a joint statement on this legislation that sounds more of reservations than endorsement, www.ndss.org/content.cfm?fuseaction=NDSS.article&article=1153 , appears to me that both Dr. Leshin and Mr. Will are in favor of this piece of legislation. Maybe NDSS and NDSC would like to reconsider their views on this bill.
I don't know how many of his colleagues Dr. Leshin can count on helping support this bill. He actually wrote on his web site, "I've known for years that obstetricians and pediatricians could do a better job at delivering the news, but this article really enforces my feelings that way too many of my physician colleagues are just jerks." Gosh, Dr. Len, when are you going to tell us what you really think?
I guess we were lucky. We ran into some obstetricians, well, at least one, and neonatologist/pediatrician who were super, far from being jerks. I don't think they'd have any problem with a program aimed at doing a better job of gathering and spreading more useful and accurate information.
Though I think NDSS and NDSC do have a valid point that there's just as much need for post-natal information as there is for prenatal. But I think they need to get with the program here. -- Respectfully, Bob, Charlie's dad
>>

[Kristen]

Bob, I respectfully disagree and say that YOU need to get with the program. Though I am truly grateful that you had a good experience the words "you'll have more babies, you don't have to keep him" and "it was an accident, but you are still young, there will be others" still ring in my ears to this day. *I* am in the vast majority that recieved this kind of treatment. I know what is out there and what others have been told prenatally about having abortions. Letting the babies die. Giving them away and forgetting about them.

Dr. Len cuts on slack, that is for sure, but in a society of doctors thinking they are God and therfore free to do and say as they please and put a sliding scale of value on human life, it is 100% necessary. There are plenty who ned to be brought down a peg and if putting the screws to them and giving them a wake up call is what it takes, then I say so be it!

I do not view NDSS's statement as having reservations at all. I read it and gleened for it that as long as we are discussing prenatally, let's expand it to post natally as well and also to have the monies jointly controlled by drs and special needs organizations probably to reduce misproprgation of funds and to increase compliance. I understand and appreciate these views as would anyone who wants to see this done and done right!

[wrblack]

Well, perhaps I was unclear and perhaps I am mistaken. But, among other things, I was expressing my disappointment with NDSS/NDSC lack of support for S. 609. I do not read, " ... However, we have concerns about specific elements of the Prenatally Diagnosed Condition Awareness Act: .... We strongly encourage Congress to consider how these successful existing programs and services can be expanded to increase their reach and impact, rather than creating entirely new programs and services that would be duplicative and not cost-effective," as an endorsement of the proposed legislation.
I believe Dr. Leshin and others have said that a national clearinghouse for information is something that DSMIG has wished for for a long time and, that alone, would be worth the $5 mil a year price tag. And maybe I'm wrong in reading into the NDSS/NDSC joint statement their saying they don't want Congress having NIH encroach on their turf. Anyway, that's why I copied both NDSS and NDSC with my post to Down-syn and UpsNDowns.
Haven't seen any response nor comment from Dr. Leshin yet. And don't know that I will, though fairly outspoken at times, he can be rather taciturn.
But I would hope we could all, you, me, Dr. Leshin, NDSS, and NDSC, support a program "to increase the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions" (from the bill). -- Bob

[Kristen]

"We strongly encourage Congress to consider how these successful existing programs and services can be expanded to increase their reach and impact, rather than creating entirely new programs and services that would be duplicative and not cost-effective," Why am I seeing this as having nothing to do with an endorsemtne or not?

To me it says - let's not reinvent the wheel. Let's take the one we already have and make it bigger and better and more effective so we can get the biggest bang for our buck! Let's not fritter away the limited funds retracing our steps and getting no where. Let's take that money and make sure we get into those doctor's offices and into those hospitals and into those conversations and make sure we get ourselves heard loud and clear. Let's work together with existing agencies who also have their budgets set and have synergistic action together rather than retrace steps alone. Use those contacts already made. Use that staff that has already been working in the field to open those doors and reach the families as soon as possible.

Why am I seeing that and not a lack of endorsement?

[wrblack]

I had copied both NDSS and NDSC with my post from yesterday. And I got replies from people at each. The reply from the person at NDSS actually tried to copy Down-syn and UpsNDowns. So, I thought I'd share both:

<<Bob,
We appreciate your interest in this important issue for the Down syndrome community. We agree with you that more work needs to be done nationwide to ensure that parents who have a child with Down syndrome receive accurate, up-to-date information and support -- either through their health care providers or other sources.

The National Down Syndrome Society appreciates the spirit and intentions of the Prenatally Diagnosed Condition Awareness Act, but as we said in our joint statement with NDSC, we have concerns about specific aspects of the current bill. As a national organization focused on education, research and advocacy for the Down syndrome community, it is our responsibility to express these concerns and attempt to influence the details of the bill when there are legitimate areas where improvement can be made.

The four main areas that are of concern to us are:

1. The current bill does not acknowledge the extensive information and support services already in place through NDSS, NDSC and other organizations. While these successful existing programs and services can benefit from additional funds to increase their reach and impact, it would be duplicative and not cost-effective for Congress to create entirely new programs and services in this area.

2. The current bill does not require that information and support services be offered to parents whose child receives a postnatal diagnosis of Down syndrome. It is just as important to provide these services to parents who choose not to undergo prenatal testing and have a child with Down syndrome.

3. We would like to see more focus on patient privacy concerns, including an informed consent provision that requires a disclosure statement outlining how a patient's information will be used.

4. We want to ensure that decisions regarding distribution of funds provided by this bill place an emphasis on partnerships between health care groups and disability organizations. Cooperation and collaboration are critical for success.

We will keep you and the rest of our constituents updated as this bill progresses. We continue to welcome your feedback and thoughts.

---
Suzanne Elliott Armstrong
Director of Communications
National Down Syndrome Society
Phone: [phone]
E-mail: [e-mail] >>


<<Thanks for your note and all the links, Bob! I'll pass it along to our Governmental Affairs Committee.

David Tolleson
Executive Director

National Down Syndrome Congress
1370 Center Drive
Suite 102
Atlanta, GA 30338

1-800-232-6372 Local: 770-604-9500
Fax: [phone]
Website: www.ndsccenter.org
E-mail: [e-mail] >>

So, stay tuned. We'll see how the bill progresses, current status is read twice and referred to the Committee on Health, Education, Labor, and Pensions. Wait and see if this bill is enacted to amend the Public Health Service Act and what it looks like then. -- Bob

[alisonzmom]

Thought I'd share this link with you all......

www.lifesite.net/ldn/2005/apr/05040502.html

It leads to another article about the study that George Will refers to in his column. There is also a link to the study there.

Barb