Crohn’s and Colitis Foundation (CCFA) 990 Form, Fundraising, and Finances

I was doing some research and happen to find Form 990 for the Crohn’s and Colitis Foundation (CCFA) .The latest year I could find was for 2010. In 2010, CCFA made $45.12 million in revenue and had expenses of $48.3 million. This left CCFA with a deficit of over $3 million. However, in the same year CCFA reported a net worth of $5 million ($22 million in assets and $17 million in liabilities). Around $15.65 million was spent on grants while $3.9 million was classified as “other”. Also close to $3.37 million was spent on postage, mailings, and publications. Is CCFA aware that it is 2012 and not 1992? I am all for getting the word out but aren’t there more effective ways of doing the same thing at a cheaper cost? I also saw the organization redesigned their website this year and wonder how much that cost.

The largest contributor was the Leona and Harry Helmsley Charitable Trust ($3.36 million) in 2010. The trust according to their latest financials in 2011 had $4.1 billion of a net worth. Whenever I read research articles I often see the Leona Helmsley Charitable Trust as a provider of funds. Although Leona married a rich man she was a millionaire in her own right before she married. When Leona died she left $4 billion to the charitable trust. She also left money to her dog “Trouble” but that is a whole other story in itself. Other contributors included Abbott Laboratories (maker of Humira), Ortho Biotech Clinical Affairs, and Carl and Edyth Linder.

Many different schools across the United States received grants. Emory University received the largest grant getting $1.8 million, Massachusetts General Hospital received $879,674, and University of Carolina at Chapel Hill got $632,872.

Even though CCFA is a non-profit the leaders should run it like a business. CCFA has a net worth of $3 million. This really does not leave a cushion in case things get bad. For instance, if the economy got worse people would obviously give less to all charities. CCFA should run surpluses in case they run into some tough years. Also as I mentioned before $3.37 million is spent on postage, mailings, and publications. It could be studied how to cut this amount without losing the message. I am usually not in favor of government spending but would have CCFA try to lobby Congress to study inflammatory bowel disease since it is such a debilitating disease and considering how much we waste (millions of dollars is not even a rounding error in the annual budget) it is a small drop in the bucket. Individuals should also volunteer not only their money but time as well to help educate family members, loved ones and friends about this disease. Heck tell random strangers about it!

FDA Panel and Humira for Ulcerative Colitis

Some good news might be coming for our inflammatory bowel brother and sisters (those who suffer from ulcerative colitis). In a 15-2 panel decision the FDA recommended that Humira would be beneficial for people who take ulcerative colitis. Humira is already approved for six conditions including Crohn’s disease. The FDA usually follows usually follows the panel’s recommendation however they don’t have to like in the case of a breast cancer drug. We will have to wait until the end of the year though to see what the FDA actually decides.  Last November the FDA rejected Abbott (maker of Humira) application to be used for ulcerative colitis. The FDA claimed that the drug did not show that it helped patients.

 The FDA should know that drugs work differently in everyone and no two people are alike. This is why I believe once a drug is approved for safety by the FDA people and their medical professionals should determine if they should take the drug. Not only would this bring in more competition which would actually drive down the cost of drugs but would make patients more aware instead of blindly trusting the FDA.

What is bizarre is why the FDA has to approve whether or not a drug is effective. Patients and doctors are far better at doing this then the FDA panel. My question would be what 2 people on the panel voted not to approve Humira for ulcerative colitis? Do these people have any family members with ulcerative colitis? Do they know what it feels to have ulcerative colitis? If you said “No” to the two previous questions then go to the head of the class. People have a huge incentive over their health especially when it is seriously. I would be willing to bet that Crohn’s and ulcerative colitis patients are in the top 1% of knowledge of the population since they have a huge incentive in knowing how to get better. 

Humira and Fewer Heart Attacks?

Good news just came out for those who are taking Humira (well for at least psoriasis anyways). In this news report it appears that treating psoriasis with drugs that inhibit TNF (tumor necrosis factor) could possibly reduce the risk of myocardial incident when compared to other possible treatments. The way I understand psoriasis is that it is an autoimmune disease like Crohn’s however leaves people with patchy and itchy red marks all over their body which doesn’t seem very pleasant.

 In the study Dr. Jashin Wu looked at treatment information and new diagnosis for 9,000 people with psoriasis. In the study which looked at people over 4 years after treatment there were 3.05 myocardial incidents per 1,000 patient years as compared to 3.85 myocardial incidents per 1,000 patients years. This was also lower than the 6.73 rate for patients who took topical drugs. TNF inhibitors may have a 21% lower myocardial risk when compared to other drugs. TNF drugs are drugs like Remicade, Enbrel, and Humira. Hopefully in the future we will have more of these types of drugs to increase competition.

The question of the hour however would be does this study translate into meaning a lower chance of myocardial incidents for Crohn’s patients? My guess is maybe but since Crohn’s is a gastrointestinal disorder maybe not. What probably should be studied is how anti TNF drugs like Humira, Remidade, and Enbrel lower the chances of having a myocardial incident. 

Tofacitinib Improves Ulcerative Colitis While FDA Delays

In this most recent WSJ article the drug tofacitbin helped improved symptoms for people who had inflammatory bowel disease. The article is published in the New England Journal of Medicine which can be found here.  The doses ranged from .5 mg to 15 mg and were taken for 2 months with a 194 patient population.  The largest response was seen in patients who took the largest dosage (15 mg). In the group that took 15 mg 78% of patients saw a response (response was also statistically significant) and was much higher than the placebo rate.  The only side effect was an increase in both good and bad cholesterol (LDL and HDL). However, I would imagine this could be controlled with exercise, eating right, and perhaps a statin (Crestor or Lipitor).

The drug is being studied to be used in patients with ulcerative colitis however patients with ulcerative colitis take similar drugs to Crohn’s patients. Pfizer (company that makes tofacitibin) is still waiting for the drug to be approved for rheumatoid arthritis and the FDA was suppose to make a decision by August 21 however pushed that back three months to November as seen here.  What is interesting is that tofacitinib would be the first drug approved for rheumatoid arthritis in over a decade. What is even more interesting is that tofacitinib has one of the largest clinical databases for any rheumatoid arthritis drug ever submitted with over 5,000 patients taking it in 44 different countries yet the FDA still needs more time to analyze the drug.

What is encouraging however is that in May a panel of FDA advisors in an 8-2 decision should be approved (FDA doesn’t have to follow panel advice but usually does).  I wonder what would happen if you had a panel of 10 family members of people who either suffered from both rheumatoid arthritis and ulcerative colitis. I would be willing to bet the rent money that that decision would be 10-0 to approve. The FDA panel has no personal experience with these illnesses nor do they see the daily pain that people suffer as the result of these diseases. While I agree the FDA should be in charge of safety of drugs they should in no way shape or form be in charge of how effective the drugs are. By pushing back the possible approval date patients will suffer and be harmed in the process which hardly anyone ever talks about. Also tofacitnib seems much safer than Remicade, Humira, or other drugs. The FDA acts like a cartel deciding what drugs go on and off the market. As a Crohn’s patient I want as many options as possible. Let me as a Crohn’s patient decide what I ingest into my body. After all I do care more about my body than any bureaucrat! 

Endometriosis and Crohn’s

In this study of 38,000 Danish women who were hospitalized between 1997 and 2007 and then tracked up to 13 years after their follow up. More women developed inflammatory bowel disease (ulcerative colitis at a rate for than double Crohn’s).  Women who have endometriosis were 50% more likely to get inflammatory bowel disease than the general population. The woman who had surgery to verify that they had endometriosis were 80% more likely to get inflammatory bowel disease than the general population.  In this study the percent chance of getting inflammatory bowel disease was .8%.

Even though women who have endometriosis are more likely to get inflammatory bowel disease a 50%-80% increase in a disease the disease would still affect relatively few women. Although, it is interesting if endometriosis is causing inflammatory bowel disease. When looking at these studies we have to be careful not to assume X cause Y since the human body is so complex and there are many factors involved. 

Humira and Weight Gain

Recently, I have noticed that I have gained some weight while on Humira. My usual weight is between 144-153 lbs. I peaked a week or so ago at 162 pounds when I went on the scale and just felt heavy. As of today I am 160. My father even made a comment asking if I had a potbelly so I really know I was getting heavy I wonder if the Prednisone is still in my body since I have been on it off and on since November. I can still remember wanting to eat 5 times a day on Prednisone. In an odd way it was almost magical even though I was diagnosed with a chronic disease. Most of my days were just spent resting and I still remember sleeping on the couch for a week or so because my parents were worried about whether or not I had enough strength to climb the stairs. In addition to this I also remember being in search of food and actually got tired of eating really well! Anyways, my face has blown up a little bit with pimples however I think that should go away. I thought my hair was thinning however my hair seems to be thicker than before. Most likely I might visit my doctor just to check and make sure I am not getting dangerously heavy. Although I am 5’11 and weight 160 I just feel big. I have been working out every day and have been cutting back on sweets as well. I wonder in some odd way if the extra weight is helping the Crohn’s. I remember reading about an article about people who had abdominal fat here. Although this scientific article claims that Crohn’s disease is associated with an increase in central fat accumulation although I wonder how much this is due to the medication that Crohn’s patients take. I have really never noticed a large Crohn’s patient most seem to be thin or average weight. I myself was lean before I was diagnosed with Crohn’s and wonder if what I ate over the years and excessive working out had anything to do with it.

 When I first went to the hospital I was as thin as a rail weighing only 125 lbs. When I was younger I was large as a kid up until around 13 or 14 and then I began working out and in college I was somewhat of a crazy person working out every day for at least 40 minutes on the elliptical. In graduate school I continued the same pace on weekends I could go for over an hour on the elliptical and it felt really good burning over 600 calories. If I remember correctly a few times I burned over 700 calories. The calories were flying off but I wasn’t always eating the best things. After my work out I would treat myself to Fuzzy’s (Mexican food) refried beans, followed by a Whataburger with cheese and fries, and then a 7-11 brownie for dessert. I am not going to lie this was food heaven. However, I don’t think it was good for my body. As I got older and even before I got Crohn’s I started trying to eat more salads and fruits and branch out

Crohn's and Pollution: A Link?

I came across this news story that I found interesting. Apparently, Dr. Josh Korzenik of Harvard Medical School seems to have an interesting view of what may be causing Crohn’s. Northport, Washington is a city of 296 people yet has an inflammatory bowel disease rate that is 10 to 15 times normal rates. The city is located downstream from a smelter in Trial British, Columbia.  Apparently, people could smell the population when they were growing up. This is really interesting considering I have read about always read about environmental factors that could affect whether or not people have Crohn’s but never though it could be tied to pollution. I am somewhat skeptical because of this study that looked at air pollution and inflammatory bowel disease and showed that air pollution was not related to inflammatory bowel disease however exposure to nitrogen dioxide and sulfur dioxide did increase the early-onset of inflammatory bowel disease. There is always the possibly that some other factor is causing inflammatory bowel disease especially in a population that is only 296. Also I would be curious to examine what these people eat. Canada which isn’t too far north of this city has one of the highest rates for Crohn’s in the world yet no one yet has been able to figure out why.  However, these people of Northport, Washington should be examined closely to see what clues might emerge that can help us solve the Crohn’s puzzle.