Capital Capital Hill Day and President Bush’s FY2006 budget

[rosy3939]

Capital Hill Day and President Bush’s FY2006 budget.

As we fight to get increased funding from the government for the NIH (National Institute of Heath) and it division, NIAMS (National Institute of Arthritis and Musculoscleatal and Skin Diseases) we must be aware of proposed FY2006 budget put forth by the Bush administration.

The proposed budget earmarks a 1% increase in funding for the NIH but all additional funds are earmarked for bio-terrorist and homeland security research. Very critical programs indeed but other program such as psoriasis and psoriatic research may very well take another hit as it did last year! Make no doubt about it there is a major need for funding for bio-terrorist and homeland security and but NOT AT THE EXPENSIVE of other critical and meaningful medical research projects!

Last years the 2005 appropriations bill sign into law by President Bush increased funding for the NIH by 2.7% yet funding for psoriasis and psoriatic arthritis fell by 13%. All of the increases in the NIH budget and more went to bio-terrorist and homeland security research. Many major programs were cut!

These are very difficult time for us who suffer from Psoriasis and Psoriatic Arthritis. There is so much hope in the medical community that better, more effective and safer treatments are within our grasp and that many scientists believe that a cure is possible, but without increased research from many different independent sources this may not happen. Best case scenario progress will be delay for too many addition years!

Other organizations and research groups are bemoaning the loss of research grants, which will hinder the ability to do quality and meaningful research. People lives are at stake and we can not sit ideally by. The American Heart Association said in a recent press release, “We applaud the President for all his work to safeguard Americans, but we believe part of providing safety and security is to fight diseases that kill and effect the most Americans”. The AMA goes on to say, This is the third year in a row that the proposed budget threatens to slow progress in medical research”.

Dr Alice Jacobs of FAHA said, “Minimal increases in the funding for the NIH increases well below the rate of inflation – limit our chances of capitalizing live saving and life changing medical research”.

I have been quoting the AHA but it is the same for all diseases that receive funding from the NIH and in our case NIAMSD. A major increase in the NIH budget not only insures that we as sufferers of psoriasis and psoriatic arthritis receive additional funding for what ails us but other family members who suffer from heart disease, cancer, diabetes, kidney and liver disease will also benefit. We are all in this together. Medical research is not wasted pork barrel spending but an investment in people, American people and those who suffer throughout the world. Investing now will mean a return in the future. Not only will research save lives saved but also will increase then quality of life of so many sufferers. Capital Hill day is coming very soon but that not enough. Letter writing and phone calling to you representatives is a must! I would hope that a strong Public Policy Statement from the NPF is forth coming with regards to the proposed FY2006 budget! Other nonprofits have questioned it why not the NPF? We can not allow another net decrease in government spending for research of PSORIASIS AND PSORIATIC ARTHRITIS!

[makeitgoaway]

Thanks Mitch!

I hope Joey reads this. CHD is around the corner and I don't see a whole lot happening to promote it and more importantly organize it. In my humble opinion (5 years as a registered lobbyist in the state of NJ with experience representing health related associations before government), there should be a membership blitz happening right now. This past Sunday morning, 5 Npf members sat over breakfast and had an impromptu brain storm session for about 20 minutes. Some great ideas started flying that could really make an impact. I think at the very least, a formal chat involving members and NPF staff should be scheduled. With over 44k members belonging to the NPF, if organized properly, we could be a serious force in DC. But first, some basic fundamental organizing needs to take place. I don't know what has been going on behind the scenes at NPF HQ, but I can tell you from where I sit, very little has been done to communicate with and organize the membership. We are ignoring untapped resources. This needs to change ASAP! I have a lot of knowledge and ideas that I would love to share.

Your comments are welcomed!

[kkellogg]

Ditto. I was talking with another member recently about preparing for CHD in an effort to present a unified agenda. Seems like we would get better bang for our buck if we were all on the same page. I am hungry for some pre-planning.

[chaimFL]

Steve,

I think (I could be wrong, but unlikely :p ) that Joey is probably attempting to set up CHD to be "idiot proof" (excuse the label). In other words, it's more likely the exact opposite of unorganized. Probably more along the lines of being organized enough that John and Jane Doe can walk in and be successful with no experience neccessary. You, being experienced, are the exception, not the rule.

The best thing for experienced people to do is to give Joey a call and share any ideas and ask all questions.

[makeitgoaway]

Steve,

I think (I could be wrong, but unlikely :p ) that Joey is probably attempting to set up CHD to be "idiot proof" (excuse the label).

Idiot proof does not always equal effective. We have 44k potential resources that could have a significant and positive affect on CHD with very little effort.

Simple things that can help the NPF have a major impact at CHD are not happening in my view and the clock is ticking. Why is the membership not being reached out to?

There are many here with a lot of first hand experience and many great ideas. We need to tap into those resources. I hope I’m not taking time away from my family and a day off of work to see my NPF buddies (no offense guys!).

I have many many ideas and suggestions that I am willing to share. I'm sure many others do too.

This does not have to be a one man show.

[chaimFL]

I think if you put the things you are saying together you will see why the membership is not being tapped.

We have 44k potential resources that could have a significant and positive affect on CHD with very little effort.........There are many here with a lot of first hand experience and many great ideas. We need to tap into those resources.......I have many many ideas and suggestions that I am willing to share. I'm sure many others do too.

That's a lot of people to tap into!! It's probably a better idea and more efficient if those that have ideas and experience offer it instead of having someone weed though 44,000 poeple.

I also, think that posts started before the implementation of CHD really got underway and therefore put Joey in a "I have to catch up" position. I have more thoughts on this, but I will PM them to you so people don't take it the wrong way.

[makeitgoaway]

I think if you put the things you are saying together you will see why the membership is not being tapped.



That's a lot of people to tap into!! It's probably a better idea and more efficient if those that have ideas and experience offer it instead of having someone weed though 44,000 poeple.

I couldn't disagree more, but will await your PM.

[bella247]

I am all for setting up a universal approach, which everyone could follow. But at the same time, one thing we've spoke of recently, is some sort of letter, follow with a petition to be signed by sufferers and concered friends/family.

How much work could that be? I would be willing to help the NPF in any possible way that i can, and if it means going to all my family memebers and around to drs. offices, i'd do it.

I am with you Krista, lets meet and continue to talk to set up a plan, a way to attack this issue like the disease attacks us, immediately!!!!!

Bells

[jshearer]

Mitch,

Thanks for posting, but I'd like to clarify one statistic that was cited. Since 1995, psoriasis research funding has decreased at NIAMS by 13%. The present level of funding, about $5 million, has held steady over the past couple years. But, as we all know, this isn't enough. We need to increase funding every year, a worthwhile goal made more difficult by the current fiscal problems facing our government.

And I appreciate any and all comments and suggestions people have to make Capitol Hill Day, and our public policy efforts, more effective. I've tried to stay accessible to people by posting on the message boards and sharing my email address. If anyone has suggestions or comments, please don't hesitate to send them to advocacy@psoriasis.org.

To this end, I'll be participating in a web chat later this month related to Capitol Hill Day. We don't have a date yet, but we'll post it as soon as we pin one down. This will be a forum for people to share new ideas and ask questions about Capitol Hill Day. So stay tuned...

Thanks,
Joey

[misales]

Mitch,

Since 1995, psoriasis research funding has decreased at NIAMS by 13%. The present level of funding, about $5 million, has held steady over the past couple years. But, as we all know, this isn't enough.

I would agree with you Joey, although I am not an expert on the statistics you are quoting. I'm not sure how partisan politics runs a big play in this number. If I were to guess, I would tend to believe that a number of Dermatologists may favor the Bush administration considering it's progressive views on medical liability and since I continue to hear that the republican tax platform continues to favor the "rich". Now I'm not poor but I don't bring home a Dermatologist's salary either. Due to this fact I wonder if a number of Dermatologist would be behind Bush just for the tax relief and potential for liability relief. They say people vote their pocketbooks.

Basically there are more ways to skin a cat in Washington then to go there and fight for a share of the tax revenue. Alternatives like making it easier for our dermatologists to do their jobs is one. Additionally tax incentives for those who pursue health concerns without Federal Funding is another. Believe me, there are people out there that want a piece of our pockets or our insurance companys pockets. Take a look around you. I see it all the time. The last place that I like to put my faith in is another government program. I would place my bets on private sector money. Quite honestly is $5,000,000 dollars for psoriasis research worth banging your head over. $5,000,000 dollars is the equivilent in dollars of 416 people on Enbrel for a year. It sounds like a lot, but in real numbers for a country our size it's just a couple of pennies. My guess is that this cure is going to come from the private sector where the real money is....and the motivation too. I think we should look at making it easier for them to make those bucks.

And I appreciate any and all comments and suggestions people have to make Capitol Hill Day, and our public policy efforts, more effective. I've tried to stay accessible to people by posting on the message boards and sharing my email address. If anyone has suggestions or comments, please don't hesitate to send them to advocacy@psoriasis.org.

State level activisim Joey. I happen to be a supporter of the University of Michigan, most importantly when it comes to my psoriasis and dermatology in general. Now the NPF wants people in Michigan, and any state for that matter, to cough up their own money to fly out to Washington to make a statement. I personally believe in the dermatologist and scientists at the University of Michigan. They may even be the ones to make the big break because their good. Can an impact be made on state funds to further this cause. The NPF has given grants to the University of Michigan as I have noticed in the past. Is their any state level activism that can occur to achieve the same results, most importantly, for those of us that for whatever reason cannot make a trip to Washington. Believe me, a one hour trip to Lansing in a car is a lot easier to do than a flight to Washington DC.

[ouchyk]

Quick question here...does the NIH give funds to universities for studies?

Anyone know?

Karen

[jshearer]

Yes. The Extramural Program (http://www.niams.nih.gov/rtac/index.htm) funds research and training in universities and elsewhere:

"The NIAMS both supports and conducts medical research. The majority of our budget goes to fund researchers to undertake a wide spectrum of basic, clinical, epidemiologic, training and other programs in universities, medical schools, and academic health centers - known as "extramural" research. We also have a cadre of scientists who conduct research on bones, joints, muscles, and skin in laboratories on the NIH campus in Bethesda - known as "intramural" research. The goal of all of the research that we support - whether at the NIH or in other laboratories across the country - is to advance our scientific knowledge to improve public health."

[ouchyk]

I just found an answer to my question;

" NIH is one of eight agencies that make up the Department of Health and Human services. NIH awards, by far, the most grant money to US Universities to support biomedical research "

This is from the University of Penn's website...hummm...

So my thought is this if any university wants to study and find better treatment or quite possibly a cure with funding from the NIH then CHD to me sounds like the best bet right now!!

Karen :)


Thanks Joey you beat me to it :)

[jshearer]

The federal government is the single largest funder of medical research in the world. Last year, the US Congress appropriated $28 billion for medical research.

Members of the psoriasis community who are interested in a cure are interested in research. If you're interested in advancing research, you should be interested in the largest research funder in the world--the US government.

Congress controls how the government spends its money. If you want to increase psoriasis research funding, lobbying Congress is a powerful way to do it. Capitol Hill Day provides an opportunity for people to do this. The letter-writing campaign related to Capitol Hill Day is another way.

Most state governments are starved for money because of the increasing federal mandates and decreasing revenues. State governments simply don't have the ability to fund research like the federal government can.

[misales]

here is a quote from a little u of m blog concerning the UMHS: It is a NSF grant, however, there are many mentions of the NIH grants.

"FWIW, I work on an NSF-funded grant project at UM. We have to calculate indirect costs for the university at 52%. For that, we get a basement office in a terrible building, access to two five-year-old desktop computers, and what I would assume to be about 10 minutes per week of secretarial support. For this, the U gets $52k per year.

There are all kinds of fun rules attached to our grant, too. For instance, we can't send mail first class (37 cents). We have to send it all as Express Mail (about $16) so it can be tracked. Priority Mail, also trackable, won't do for some reason. God forbid someone might steal a stamp and it should go untracked!

We also have to buy our supplies through M-Stores because of UM regulations. Need a spindle of 50 CDRs? That's $18 at Circuit City, or $35 from M-Stores. Printer paper is $16 a carton at Sam's, or $30 a carton through M-Stores.

So between NSF rules and UM rules, we burn up a lot of money for no clear purpose.

Bear in mind also that Michigan gets only about $350 million from Lansing every year, which is about 9 percent of our budget. The vast majority of revenues (excluding grants to specific projects) come from tuition, the federal government, private gifts, endowment monies, alumni contributions, et cetera.

So why does UM act like a private university? Because it is 91% private."

Well anyways this is suggesting a few of my problems with having the government run stuff. Also, the writer suggests that 9% of U of M's budget is from the state, $350 million, I am assuming this is somewhat close.

I've worked for three different cities in my life. In one city at the end of the fiscal year our boss would come down and tell us how much we had left in the budget for that year. He would say find stuff that you want because we need to spend that money. The thinking is that if we don't spend the money we won't get the same amount or more in next years budget. Good thinking but we spent a lot of the taxpayers money on junk that was not necessary to perform our mission.

Now if I'm not mistaking the amount earmarked for Psoriasis research is $5,000,000. I'm just gonna take a wild guess here but I don't think $5,000,000 is gonna put a dent in a cure. According to some sources I've seen estimates on our expense on care for psoriasis is about 3.2 billion. Why only $5,000,000 is the question, I think it's gonna take a lot more than that to get to a cure quickly. I'm not sure who picks these numbers in congress but I think they are way off if they think they're gonna get the cure.

I'm not sure how much research is done and paid for by the big drug cos., but here are some numbers on enbrel...

Reported by Wyeth's marketing partner Amgen, full year Enbrel net revenue in North America was $1.9 billion, an increase of 46%. Wyeth has exclusive rights to Enbrel outside of North America where net revenue for the year reached $680 million, more than double the previous year.

I think these guys would have a better shot at it with some of the money they have, however, If they were businessmen they would make the cure something you need to take all the time, not just once. Thats not good medicine but good business if you're in it for the money.

I think we need to get someone in congress who has psoriasis, or maybe we already do. I think that would have some significant impact on the $5 million. $5 million is really dissappointing to me.

[ouchyk]

Brad,

It appears that Amagen does it's part with reseach for univerisities, you can go to thier site to read more about it. I copied the following. Not sure if it's what your driving at? They may have more regarding funds, I didn't get too far into it. They also do thier own research but I don't think your interested in that part of it, or maybe you are.

Extramural Research Alliances

Amgen has a long history of supporting extramural research to academic investigators worldwide. Please note that Amgen does not sell reagents for research purposes. We do, however, provide materials for (non-human) research studies at no cost to academic institutions. To request materials or submit publications for studies currently being supported, please select the appropriate form below:


As far as university grants are concerned, I don't see what control we could possibly have over them, or what it is you want folks like us to do, we don't write them....perhaps this would be something that you could talk to your elected officials about?


Is five million ideal, well NO....lol...but hey it's better than the funding allocated at this moment isn't it??

Karen goes to CHD... :D !!

[misales]

Is five million ideal, well NO....lol...but hey it's better than the funding allocated at this moment isn't it??

Karen goes to CHD... :D !!

Karen I think the way I read it is that five million is already allocated and has been for the past few years. The problem is that I think in the big picture it's not that much money considering how complex psoriasis is.

I cannot make CHD, however, will attempt to go to Lansing. Apparently the state gives $350 million to the U of M. This is not earmarked for psoriasis, however, keeps the place on the map. UMHS is a good place in general and produces new dermatologists and research too. I don't think that my efforts here will be in vain. I'm hoping that some others in our group will be there as well. If anything I hope to learn more about what the state does to help us. I know that MIchild was discussed at our last meeting and could be a very significant factor for those of us in Michigan with children with psoriasis. We are blessed to have Marielle and Jessie in our group. I've heard the storys about kids getting pulled out of school and hidden from the public due to this disease. In Michigan, all the kids have insurance, for psoriasis too. There is no reason for a child in Michigan not to be under the care of a dermatologist.

I think our state does a lot for the kids and has a medical concern, as well as good facililties. Now this may not be the cure, but care is important in the meantime until it arrives.

And I'm not trying to be a jerk, I'm trying to figure all of this stuff out. The money, the reasons, and whats behind it. And for Mitch, I don't think it is a partisan issue, but I think $5 million is a joke for a cure for this disease. I don't think I'm out of line with that observation either.

Karen, how many of the redsox players will as individuals make over $5 million dollars for playing baseball next year? Just wanted to put things into perspective.

[ouchyk]

Brad,

" Karen, how many of the redsox players will as individuals make over $5 million dollars for playing baseball next year? Just wanted to put things into perspective. "

I don't know thier salaries, however if any of them have psoriasis I will be sure to ask them to donate some of thier monies. :) .

And regarding that figure of $5 million dollars, thats our current funding, SAD isn't it?! That's why we are going to CHD, to raise awareness that more funds are needed....This is the ultimate goal if I'm understanding it correctly.

Good luck at the state house,
Karen

[misales]

Brad,
And regarding that figure of $5 million dollars, thats our current funding, SAD isn't it?! That's why we are going to CHD, to raise awareness that more funds are needed....This is the ultimate goal if I'm understanding it correctly.

Good luck at the state house,
Karen

Yes it is a very sad number. Being a union member for many years and having been involved with negotiations, etc...I'm curious what the NPF would consider a fair raise (JOEY?) I guess my experience with government suggests that there is always a method to the madness on how they come up with these numbers.

And honestly, if you're talking cure, I think $5 million is a flat out joke. I hope that I'm wrong, but I'm trying to be realistic here. Mitch, I hope you run a picket line outside the capital as I'm not sure that dollar figure warrants respectable negotiation.

It's probably better that I stay away from Washington since It wouldn't be in my best interrest to get myself arrested.

Anyway, I think this was good dialogue and I certainly got some answers out of it.

Heres the red sox salaries

http://sports.espn.go.com/mlb/teams/salaries?team=bos

I think we'd be better off hitting up steinbrenner for some cash.

You know this has also brought up another course of action in my mind. If we are really after the cure maybe it's time to throw some caution to the wind and have the NPF sell out to the big pharma to get more money for research. Mitch recently stated that "he would get in bed with anyone to cure psoriasis". Maybe some of that drug "blood" money could be easier obtained and better served at the direction of the NPF. In my opinion, less government.........more NPF.

[ouchyk]

Brad,

" Karen I think the way I read it is that five million is already allocated and has been for the past few years. The problem is that I think in the big picture it's not that much money considering how complex psoriasis is"

Sorry, I missed that earlier, I'm tired, it's my bedtime....indoor recess all week does that to a person lol

You couldn't be more right there, it's PATHETIC.....that's why it's so very important to be heard!! I want more than that!! It's OUR tax dollars at work here....We can do this! However, it's one step at a time...CHD for the NPF is fairly new, I'm just glad that we have a venue for which we can have our colletive voices heard.

Karen :)

[nitegale]

The money spent on medical research for psoriasis and psoriatic arthritis, by the fed government is just plain laughable. Considering the millions that this disease affects and the billions in $$$$ spent on treating this chronic disease, we deserve more! Grant it this disease might not kill me but it has cut deeply into the quality of my life as it has done to so many of you. Not one behavior can I think of has lead to me or you having this disease. Not one prevention can I think of can avoid getting this disease. So why accept this pittance or allowance from the fed government to study this disease. We can do better.

All I can think of is that we must have a strong voice. Other advocates have done so in advocating funds to research aids, parkinsons etc. I don't want to pit disease against disease here but we must face the fact that in order to get more funding we are going to have to raise our voices, all I can think of is that the squeaky wheel gets the grease!

Just thinking here but I wonder if we can get the Beaver to come on board too.


Marie :)

[misales]

So why accept this pittance or allowance from the fed government to study this disease. We can do better.


Marie, I like the word Pittance. Maybe T-shirts like "thanks for the spare change guys" The psoriasis bell ringers association.

I actually was going to bring up the aids epidemic. Portions of the problem with this virus and condition is "prevention". As of right now, I know of no way to prevent psoriasis, this disease is not due to our actions. Yet, it's the "politically correct thing to fight". It's a virus yet no cure and how many billions has the government spent on that?

You know, do a little more math. Lets say they split the $5 million up equally to each state in the union. Thats 100K per state. Thats maybe about enough to pay for 6 months of a person qualified to search properly for the cure, and thats just maybe the wage.

[nitegale]

The only way I can think of affecting change is to have a loud voice much like the one the gay community had to get the funding they wanted to force the government to research the disease in their community that was causing many to die.

As I have said this disease will not kill us so I am not quite sure if the government takes that into consideration when it comes to funding, but it surely cuts into the quality of life for all of us.

We just need to get our message out their in big numbers whether by going to chd or by writing letters.

Marie :)

[Kimbercat]

Joey,

I realize that you are working very hard on all that is involved for CHD, as well as being short-handed, but is it possible you might be able to post a template of some sort as was done last year for letters to representatives?

I'm hearing a lot of members saying they would like to write, and it seems we are letting precious minutes tick past. Some of us have no clue how to format these letters, and the template was so helpful last year. Our support group leader took the time and effort to put it on her laptop, and provide all of us access and help to actually write the letters. I would guess that several of the support group leaders would like to do the same. Perhaps this is already being coordinated with Marcia?

I know that I am a horrible procrastinator, and this was a great way to motivate me to actually get it done. Thanks for all you do! :)

I looked through some of my personal word documents, and was able to find 2 letter templates that may help, so I'll post them until Joey has time to post any changes. One of these letters is addressed to the media to help bring attention to our cause, and this may be a good time to put it to use as well.

[jshearer]

Brad...
Now if I'm not mistaking the amount earmarked for Psoriasis research is $5,000,000.
Actually, Congress hesitates to "earmark" money for specific diseases or projects in the Appropriations bills. The challenge is to work with Congress to increase overall research funding, and then work with NIAMS and researchers to facilitate more researchers. The Psoriasis Foundation is working to increase both supply and demand.

Brad...
I think we need to get someone in congress who has psoriasis, or maybe we already do. I think that would have some significant impact on the $5 million. $5 million is really dissappointing to me.
Exactly right. Last year at Capitol Hill Day, volunteers connected with over 40 congressional offices that the Foundation wouldn't otherwise be able to reach on such a personal level. We are constantly searching for a congressional "champion," and this will continue at CHD.

Marie...
Grant it this disease might not kill me but it has cut deeply into the quality of my life as it has done to so many of you.
There's a poster from an old ad campaign hanging on the wall here in Portland that reads: "Psoriasis never killed anyone, but living with it can be murder." Well, it's incorrect to say psoriasis never killed anyone, but it captures the sentiment that Marie is expressing. It's important that we communicate this to Congress.

Karen...
is it possible you might be able to post a template of some sort as was done last year for letters to representatives?
Communicating with elected officials: (http://www.psoriasis.org/resources/advocacy/contact_congress.php) "Check back in early March, when we will kick off our 2005 congressional letter-writing campaign."

We're trying to implement a very cool, new e-advocacy tool in time for Capitol Hill Day and the letter-writing campaign. As it says, you'll have to wait until March. :D

Ok, I don't know how much time I'll have today to track the message boards, so email if you have any specific questions: advocacy@psoriasis.org.

And make sure to register for Capitol Hill Day ASAP!

Thanks,
Joey