Great news!

Yesterday (Thursday), the U.S. House of Representatives passed S. 1674, the Improving Access to Clinical Trials Act. Following last month's passage by the U.S. Senate, the bill now heads to the President's desk to be signed into law.

This bill will allow people with CF to participate in important clinical research without losing their public health coverage. By removing barriers to participation in clinical trials, we can speed the development of promising new CF therapies and get them into the hands of the patients who need them.

The Cystic Fibrosis Foundation identified a significant barrier to participation in clinical trials and worked with Congress to write this common sense legislation.

This momentous achievement, almost five years in the making, would not have been possible without the thousands of letters written, calls made, and meetings held by dedicated CF Advocates like you.



YAY!!!

Take Your CF Deductions!!!!!

Join KnowCF members members LouLou, VMHoward and Julie in their first video conversation about Taxes and CF! I have not listened to this video yet, but based on the topics covered, I am very interested. I highly recommend checking this out, as a lot of CFers and CF family members are not familiar of what they can and can't deduct on their taxes related to CF!

**Moms/Dads**....definitely check this out if you are unfamiliar of what you can deduct! Look at the Nutrition and the Back at Home topics below!

This topical video series (three segments) focuses on United States tax law and deductions that may be allowed for health reasons. This engaging team has worked hard for your benefit, doing extensive research, sharing their stories, and designing a meticulous yet simple-to-grasp spreadsheet for you to model as you organize your own savings possibilities.

Three of the KnowCF e-Patient members, Lauren, Victoria and Julie have organized information on CF healthcare costs and tax deductions. These Health Opinion Leaders (HOLs) explain which expenses qualify for deduction and how to track expenses. They have created roughly fifteen minutes of engaging and polished footage on this very valuable topic.

These are the topics they will cover: (I have not listed every single topic and question. You can visit the website for more information and details)

1. What sort of medical expenses are deductible?

2. What is AGI or adjustable gross income, and how do I know if I should itemize or just take the standard deduction? How much do I need to have in deductions in order to be able to use them?

3. Can a caregiver use these deductions too?

4. What about special equipment and materials for cleaning my nebulizers?

5. What about things we wouldn’t be doing if it weren’t for CF, such as special disinfecting cleaning products and HEPA filters for indoor air purification?

NUTRITION:
6. Obviously healthy people eat food, how do I know what I can attribute to CF?

9. Are my vitamins deductible?

8. My child drinks nutritional drinks recommended by the doctor. Are those 100% deductible, or must a percentage be deducted that would not be attributable to CF

EXERCISE:
11. Is there a way to deduct my gym membership?

CF CLINIC:
12. the travel to my CF center deductible? Can I deduct miles to and from the doctor?

13. Can I deduct anything related to my transplant?

14. What about when my child is inpatient, can I deduct visitation mileage, parking, hotel and food?

BACK AT HOME:
15. Are home improvements deductible? / Can I claim home improvements that I made as a deduction?

16. Can I deduct the cost of trash?

17. How do I deduct electricity?

Click here to visit the KnowCF website! I personally have never come across this resource website. It branched from the CysticFibrosis.com Website. It looks like it can be very beneficial.

ACCESS - SHARE - GAIN AWARENESS

New & Improved Pancreatic Enzymes

Although pancreatic enzyme therapies have been around for decades, they are now undergoing a more rigorous review to help ensure that people with cystic fibrosis receive only the best, most effective and safest enzyme treatments.

In 2004, the U.S. Food and Drug Administration (FDA) required that all pancreatic enzyme replacement therapies currently on the market be reformulated and undergo clinical testing in order to receive FDA approval.

More than 90 percent of people with cystic fibrosis take pancreatic enzyme replacements to help the body absorb essential vitamins and nutrients. In CF, thick, sticky mucus builds up in the pancreas, preventing the release of important enzymes that aid in digestion. This build-up can lead to malnutrition. Pancreatic enzymes combat this problem.

The first pancreatic enzyme replacement therapy to be evaluated and approved under this new mandate was CREON® by Solvay Pharmaceuticals, Inc. CREON received approval in May of 2009.

In September 2009, Eurand N.V. announced that the FDA approved its enzyme product, ZENPEP™ — the second enzyme therapy to be granted FDA approval.

In addition, Alnara Pharmaceuticals, Inc. is completing a Phase 3 long-term safety study of an enzyme called liprotamase. Following completion of the study, Alnara will carry out clinical and regulatory activities needed for FDA approval.

Other companies completing clinical trials for pancreatic enzyme products include Axcan Scandipharm (Ultrase® ), Digestive Care, Inc./DCI (PANCRECARB® ) and McNeil (Pancrease MT).

FDA review is an important step to ensure that people with CF are getting the maximum benefit from their pancreatic enzymes.”

Because there is a connection between better lung function and higher body weight, pancreatic enzymes are a vital part of CF care. It is important for people with CF to take pancreatic enzymes with all meals and snacks.

You can click on any of the links above for more information on a specific enzyme, or pharmaceutical company!

Take Back America

I’ve heard so much “It’s just hopeless; there’s nothing I can do.” That’s the way a lot of Americans feel; but, we CAN do something. Besides praying for our country, we need to do everything we can to turn it around.

How to Take Back America Conference webcast live this weekend at AFA.net (September 25-26th)

The event begins this Friday morning and ends on Saturday evening. The entire conference will be streamed live on AFA.net.

The AFA (American Family Association) has joined together with a consortium of conservative organizations to host a top-rate, momentum building, leadership conference that will teach the grassroots how to use the Internet and how to connect after the conference using new technologies like "Webinar," as well as equip them with talking points on battle-front issues and record every workshop. Here is your opportunity to see every great workshop and speech given at this year's conference.

Review and choose the workshops you want to see - at no cost!
-How conservatives can win in 2010
-How to deal with vote fraud, the Census, and ACORN
-How to lobby federal legislation & policy
-How to bring youth into the conservative movement
-How to defend traditional marriage and DOMA
-How to understand Islam
-How the media can help us take back America
-How to stop feminist and gay attacks on the military
-How to counter the homosexual movement
-How to stop the entry of illegal aliens and drugs
-How to deal with global warming, cap and trade
-How to stop the killings: pro-life solutions


WHO IS AFA?
The American Family Association (AFA) was founded in 1977 by Donald E. Wildmon, who was pastoring First United Methodist Church in Southaven, Mississippi, at the time. The American Family Association represents and stands for traditional family values and exists to motivate and equip citizens to reform our culture to reflect Biblical truth on which it was founded. We believe that God has communicated absolute truth to man through nature and the Bible, and that all men everywhere and at all times are subject to His authority. Therefore, a culture based on Biblical truth best serves the well-being of our country as evidenced by the vision of our forefathers as set forth in the Declaration of Independence.

Today, AFA is one of the largest and most effective pro-family organizations in the country. The impact of AFA on pro-family issues is recognized nationwide. It is AFA’s goal to be a champion of Christian activism.

To that end, AFA spurs activism directed to:
* Preservation of Marriage and the Family
* Decency and Morality
* Sanctity of Human Life
* Stewardship
* Media Integrity

Click here to learn more about AFA, how it has made an impact on our nation, AFA’s recent accomplishments, and how to sign up for AFA action alerts and special projects!

CFF Statement on Health Care Reform

The CF Foundation has just released a statement on the Health Care Reform Bill! I highly recommend reading it!
CFF Statement on Health Care Reform - CF Foundation

Because the health care debate is still evolving, the Foundation has not yet taken a position on any particular health care reform bill. However, the plans being discussed contain many of the provisions the Foundation supports. I, personally, support the fact that CF patients should have access to the care they need! And I know for some, getting coverage or access to that care can be challenging. Medical costs for people with cystic fibrosis are 9 to 13 times higher than for the average health care consumer

What I don't support is "giving" care to those CFers (or really any people, for that matter) who are able to work and able to get insurance coverage through their job or some other resource. It frustrates me when those CFers become lazy and don't work because they don't want to and know they can get Medicare or Medicaid coverage... that is not acceptable in my opinion. If you are healthy enough to work, get off your behind, and work! There are many of us who struggle working, when in reality, we really shouldn't be because of our health.

There are also many other resources out there that can help you pay for healthcare coverage, and quite frankly, a lot of people don't take advantage of those resources.

I keep hearing over and over that a socialized healthcare system will be beneficial to CFers as well as other people with chronic health conditions. But I can't help wonder if that really is the case. Will I be able to get the care I need? Will I be able to get the care needed immediately? When I get pneumonia, I can't just wait another week for treatment, I have to get treated right then, or else it could become fatal. And that's the case for many other situations. I'll be honest, this new idea of public healthcare scares me somewhat.

I like what Brandi said, regarding this article: If the government is going to offer healthcare to the masses, how do we pay for it? Taxes? Taxes suck, but I can deal with it. Managed care? Managed care sucks more, but again, I'd survive. LESS care? NO WAY, NO HOW.

Like many others, I've been blessed with great healthcare coverage. And I don't want to lose it. Yes, I am still on my parent's insurance, but as soon as I graduate (for the 2nd time), i plan on getting a job in which I'm able to obtain good, quality, healthcare coverage. I WILL WORK HARD for my coverage!

Healthcare Summit

Last night, one of our local Congressman hosted a "Healthcare Summit."

The focus of the summit was a panel discussion featuring representatives from state agencies, the healthcare, business, and not for profit sectors to get their feedback on the pending healthcare legislation and their thoughts on the issue. The general public was invited to the event and was able to participate in a question and answer session following the roundtable discussion.

I went along with our CFF staff! We also had a member from our CFF board. We had submitted a few questions via email (as requested) prior to the event; but of course they didn't get around to our questions.

As you know, there is currently no governmental funding for CF! In addition (this was new to me), families and individuals with CF who are on SSI, are not allowed to participate in CF clinical trials. Right now, this is a big focus of legislation, allowing these individuals to be able to participate in CF clinical trials. The CFF feels that if we can get this legislation passed, it will help lead to more funding for CF. Our (CFF) purpose or intended focus for attending this discussion was to ensure that research would continue. This Healthcare Reform Bill is not necessarily addresses the governmental funding aspect. However, we don't want funding to certain hospitals (which then fund our research centers) to be cut back because of having to provide access for healthcare coverage to every citizen. As one panelist mentioned, prevention is a key to controlling healthcare costs. And for the CF Community, prevention includes research and clinical trials.

The overall experience was very interesting. I'm not sure if it was that beneficial for the "CFF" to attend. I have taken an interest in healthcare and how the state and federal governments are involved within the last couple of years. Mainly because it greatly affects me personally, and I am also in the healthcare field for my career (HIM and Nursing). Healthcare Insurance Coverage is a big issue for CF patients and chronically ill patients. So it is definitely interesting to see what this new Healthcare Reform Bill entailed. The U.S. Congress and Senate will be voting on this Health Reform Bill in August. And this Healthcare Summit (or debate/discussion) was to allow our Congressman to listen to "his people" and their opinions on the legislation. This particular Congressman is on several healthcare reform committees, including the House Ways and Means Committee (which has tax-writing powers) a vote in the new legislation and overall a very big pull in our nation's healthcare.

I can't say I disagree with everything in this proposed legislation, but I can't say that I agree with everything either. There are some good aspects of it and some not-so-good aspects. As most CFers know, universal healthcare coverage is NOT good for us or for chronically-ill patients (including post-transplant patients like myself). While I want everyone to have access to healthcare coverage, I am also concerned for myself and want what is best for me as well as the CF Community. And that's very hard. It's very hard to know where you stand on every healthcare issue; and it's hard to "not want" something because it will directly affect you (or me) in a not-so-good way, but might help others. A lot of the information discussed was WAY over my head. But a lot of it was not; and I feel like I understood the gist of the legislation and discussion. I'm not going to go into major details....but one point that the legislation (or Healthcare Reform Bill) addresses is that Insurance Companies can no longer deny coverage to someone based on his or her healthcare status. This is huge for me personally and for CF patients. Probably the biggest debate of this Reform Bill is a "public option (or plan)." And over the next 3 weeks, the House will be discussing that in Washington. Right now, this proposed Healthcare Reform Bill is to be voted on by August 13 (I believe). I recommend you looking into this legislation and contacting your Representative if possible to voice your opinion.

The challenge, according to this Congressman, is figuring out how to expand coverage, contain costs and preserve choice for individuals. The "choice" for individuals is what will move us toward or forward to a universal healthcare system, according to several panelists at this discussion. Now, this Healthcare Reform Bill is NOT all about Universal coverage, but does address providing access to all individuals by some way or another (not necessarily via the public sector). This bill is 850 pages long and address a lot more specific topics (but in reality, all related to healthcare coverage access).

Sorry for the long post. I really do have a high interest in this topic and want to stand up for myself as well as the CF Community. People die from CF because they don't have healthcare coverage or insurance. It's a scary topic. If we eventually move to a Universal healthcare system, that could technically put my health in jeopardy as well as many other chronically-ill patients. So I really encourage you to take interest in this issue and voice your opinion! I'm so glad I attended this event. In August, myself, two CF researchers/doctors, and a few of our CFF staff will be meeting with this particular Congressman to discuss healthcare coverage, funding, etc., directly related to CF.