World Hemophilia Day!

Today is world Hemophilia Day 2008. This year's theme is Count Me In.

The World Federation of Hemophilia describes it better than I could:

This year the theme of World Hemophilia Day (April 17) focuses on registering and identifying patients: Count Me In.

It has often been said that there is strength in numbers. This is definitely true in the bleeding disorders community. As a rare disease group, in order to be heard by governments and others, getting the numbers to back up your case for support makes a huge difference.

Having accurate statistics on the number of people with bleeding disorders identifies how many people are affected and helps ensure that they get the necessary treatment. It also helps to validate claims with ministries of health and build a case for support.

The WFH’s vision of Treatment for All is that all people with bleeding disorders need access to adequate care and treatment. The first step to achieving this is to identify those patients. For 10 years now, the WFH has been collecting data from national hemophilia organizations around the world to quantify the number of people affected with bleeding disorders. Our most recent survey identifies 205,472 people with bleeding disorders in 100 countries.

On April 17 we are launching a new publication on outreach to identify patients. The WFH has also developed a number of tools to help patient organizations, hemophilia treatment centres, and others raise awareness about the need to be counted and help identify patients. These include a poster, news release, factsheets on outreach and national patient registries, as well as educational materials for patients on hemophilia, von Willebrand disease, and rare bleeding disorders.

World Hemophilia Day was started by the WFH in 1989. April 17 was chosen as the official date in honour of WFH founder Frank Schnabel, who was born on that day.

On the day, hemophilia organizations and treatment centres around the world organize gatherings, sporting events, exhibitions, and other activities to raise awareness of the issues affecting people with hemophilia.

We encourage all patient organizations, treatment centres, and corporate partners to celebrate World Hemophilia Day this year.

We want to count you in!

Tax Day

I tend to be a procrastinator. But I had no intention of waiting until the last minute to file our ‘lack of’ income taxes. We’re getting money back for goodness sakes! But still I put it off and put it off. I finally got them done on Sunday only to get an e-mail today from TurboTax telling me the eFile was rejected. I messed up on the 2006 AGI figure the IRS uses as verification for the ‘electronic signature’. So here I am on tax day scrambling to correct the eFile and resend.

Fair Tax anyone? A federal consumption (sales) tax doing away with all income taxes? Doesn’t sound like such a bad idea right now. I know there’s plenty of well-reasoned criticism of the Fair Tax, plan but at least it’s a discussion moving in the right direction. Year after year we hear about simplifying the tax code yet it never happens. Instead it gets more complicated with additional and revised deductions and credits and qualifications pushed by lobbyists and passed by well-meaning but ill-informed legislators.

It’s time for a change. Change we can believe in. Hope we can believe in. I didn’t just say that.

Heparin Problem has not gone away

I posted about the Heparin problem back in January here. Apparently the situation has gotten worse. A recent New York Times article details the latest developments.

Here's the opening graphs:

The number of suspicious deaths in the United States linked to the blood thinner heparin has risen to 62 from 19, with most of them reported this past December, January and February, according to the first detailed analyses of heparin fatalities by the Food and Drug Administration.

The F.D.A. is still investigating whether those deaths and hundreds of allergic reactions were caused by a heparinlike contaminant made in China that was added to the drug somewhere during the manufacturing process.

The drug agency defined suspicious deaths as those involving one or more allergic reactions or a drop in blood pressure. There have been no reports of deaths since the end of February, after Baxter International recalled heparin made with ingredients from a Chinese supplier.

Before we jump to conclusions about Baxter:

In addition to Baxter, companies that have recalled heparin products made with Chinese ingredients include Covidien, formerly Tyco Healthcare, and B. Braun. Both Covidien and Braun said that they had received no reports of adverse reactions from the heparin and that the recalls had been undertaken merely as a precaution.

The common thread between this product and some seemingly unrelated consumer goods is China. I posted about China's exports last year here. Coincidence for the 2008 Olympic Summer Games host? Time will tell.