Monthly Archives: April 2011

In Case You Missed It!: Blog Round- Up 4/25-4/29

It has been a fabulous week: we had a successful Tonic campaign with Alyssa Milano to raise money for an LF program in Orissa, India; on Monday we celebrated World Malaria Day; and today we learn a little more about Buruli Cancer from our guest blogger Charles Ebikeme. Check out what you missed this week below:

April 25

  • Reading Rainposts! 04/25/2011
  • 4th Annual World Malaria Day: Achieving Progress and Impact
  • NTD Enlightenment: Lymphatic Filariasis
  • World Malaria Day – Achieving Progress and Impact

April 26

  • Dr. Peter Hotez Discusses Food and Parasites in The New York Times

April 27

  • Chagas Disease Has Now Gone Global
  • Sabin President Dr. Peter Hotez Appointed to National Institutes of Health Council of Councils
  • NTDs and the Catholic Community: An Interview with Dr. Peter Hotez

April 28

  • Schistosomiasis: Risk for Travelers

April 29

  • NTDs Surface in the U.S Health Landscape

ENJOY! and COME BACK NEXT WEEK!

Buruli Cancer: A Neglected Tropical Disease

In correspondence with Charles Ekimbe’s piece below, here is a short video documentary on Buruli Cancer and its devastating impact in the world.

The Mysterious Disease

By: Charles Ebikeme

Imagine for a moment you don’t live where you live. Let’s say you live in Benin, or Togo, or Côte D’Ivoire, or perhaps Ghana (we can even add Australia to the list). Perhaps one day you notice on your ankle a small, somewhat pointed elevation of the skin. A nodule. What you have is so painless you consider it inconsequential -it will clear up in a few days. You awake one morning with a slight fever. For this particular ailment it would be rare to have a fever, but not unheard of. Where you normally reside “man flu” is the worst-case scenario you can think of. In Contonou, Benin, you can name at least three diseases that start with fever-like symptoms and could end with your death. Your niece died from one of them – before her fifth birthday, and the other caused blindness in your uncle. But this isn’t any of those.  After a few days this nodule is now the size of a boil. In Washington DC, a boil can be excised. In Togo this is worse than a mere boil. Your foot has swollen – so much that it’s hard to stand upright. Even more disconcerting is that this all comes without any pain. What follows can only be described as horrific; a painless necrotizing skin lesion, followed by ulcer and scar formation. Before you know it, your foot is being eaten away from the inside. The lesion grows and grows, oozing fluid and puss. A wide painless ulcer now covers a large area of your lower limb.  With this disease early diagnosis makes all the difference – but it is often rare.  Surgical excision of the infected tissue has long been the first port of call. Today, along with surgery, you are given the antibiotics streptomycin and rifampin for 8 full weeks. That is if it was caught at an early stage. Your doctor did not know what it is until it was too late, as there are four other diseases that cause skin lesions and ulcers.

With treatment lesions heal but with permanent scarring and contractures which limit movement in your limb. You have no outer skin on the right side of your foot.  A skin graft, taking skin from another part of your body, to patch up the infected area is needed. Imagine a small child of less than 15 years of age needing a skin graft. The lesions are sometimes so large that finding enough healthy skin to graft on is impossible. Eventually it will invade your bones, leading to severe disabilities and deformities. Maybe they will have to amputate. Any pain you experience will be due to secondary infections. Secondary infections that might also kill you.  What you have is the second most common bacterial infection we know of – Mycobacterium ulcerans. The bacteria, produces a toxin – mycolactone. Continue reading

NTDs Surface in the U.S Health Landscape

On Wednesday, Melissa Cevallos of Health Key wrote a piece focusing on the increased visibility of rare diseases in an international consortium of health professionals.

Rare diseases are likely to get more attention now that an international consortium of patient advocacy groups and research funders has vowed to deliver 200 new therapies by 2020. For people with these diseases, such attention must seem long overdue.

Cevallos highlights the disinclination of drug companies to develop drugs for unique, rare, and endemic diseases but that is slowly changing.  In March 2011, Senator Robert Casey (D-PA) re-introduced the Creating Hope Act of 2011 to the Senate Committee on Health, Education, Labor, and Pensions. The Act is co-sponsored by Senators Scott Brown (R-MA), Sherrod Brown (D-OH), Al Franken (D-MN) and Johnny Isakson (R-GA).  The Creating Hope Act of 2011 aims to incentivize drug companies to develop new drugs for rare tropical and pediatric diseases.  The act seeks to improve the priority review voucher program which issues prizes to developers for treatment of rare/neglected diseases.

Google Images

The prize is an incentive for companies to invest in new drugs and vaccines for neglected tropical diseases. A provision of the Food and Drug Administration Amendments Act (HR 3580) awards a transferable “priority review voucher” to any company that obtains approval for a treatment for a neglected tropical disease. Sponsored by Senators Sam Brownback (R-KS), and Sherrod Brown (D-OH), Al Franken (D-MN) and Johnny Isakson (R-GA), this provision adds to the market based incentives available for the development of new medicines for developing world diseases such as malaria, tuberculosis and African sleeping sickness.

In moving forward, the National Institutes of Health (NIH) have received grant money towards a research program geared towards developing drugs and curriculum for rare diseases called: NIH Therapeutics for Rare and Neglected Diseases (TRND).  This program plan to launch a series of projects in Fall 2011 however, TRND has currently launched a few pilot projects that give us a glimpse into the variety of rare diseases they will be digging into, one of which is considered one of the most common NTDschistosomiasis.

Read the original article here.

Read about the current projects here.