2012-11-12 11:05:05 -
The International Myeloma Foundation Latin America brought journalists together with the top myeloma experts from Brazil and the United States to highlight the latest advances in treating the disease and the urgent need for new drug approvals in Brazil. Myeloma, also called multiple myeloma, is a cancer of cells in the bone marrow. Once a rare disease of the elderly, it is now increasing in numbers in people under age 65 and even 45. And now there’s a highly unusual case of an 8-year-old diagnosed with myeloma in northern Brazil. The International Myeloma Foundation Latin America says pediatric myeloma used to be nonexistent, but today there are cases although they remain sporadic and rare.
“This case is very concerning,” said Vania
Hungria, MD, a research physician at the Santa Casa Medical School in Sao Paulo, Brazil, and Co-founder of the IMF-Latin America. “We are looking into the circumstances of this case to see if we can find a cause, and of course, an effective treatment for the child.”
Although myeloma cannot be cured, new therapies used in combination and in sequence make possible long-term remissions with a good quality of life. However, the newest drugs including lenalidomide, have not been approved in Brazil, although lenalidomide was approved in the United States in 2006 and in Europe in 2007. At the IMF-Latin America journalist workshop, experts spoke of the importance of the new treatments, including Paul Richardson, MD, of Harvard University in the United States and Angelo Maiolino, MD, PhD, of the Federal University of Rio de Janeiro, and Chair of this year’s HEMO Congress.
“We can’t wait any longer for lenalidomide in Brazil,” said Christine Battistini, President of the IMF-Latin America. “We have submitted the data to the regulatory authorities here. The world’s leading experts, the International Myeloma Working Group, have indicated their approval.
Patients here deserve the same treatments available in 80 other countries worldwide.”
A study from the International Myeloma Working Group shows that without new options, when current drugs have lost their efficacy, overall survival is a median of just nine months. By contrast, myeloma patient Dorival Urino demonstrates what is possible when a patient has access to the full range of treatments. He sued for lenalidomide when he had exhausted all available therapies in Brazil. “All of my treatments had stopped working. I was in constant pain and too weak to even get out of a chair on my own. But with lenalidomide added to my regimen, I stand, I walk, I have a normal routine, it is like a second chance at life.”
The IMF-Latin America continues to work on behalf of patients to help assure they get the treatments they need.
ABOUT MULTIPLE MYELOMA
Multiple myeloma affects production of red blood cells and compromises the normal function of the immune system because it is a type of cancer that originates in plasma cells (in the bone marrow)—cells integral to the immune system, according to Dr. Maiolino. He added that it’s like “a disease without a cure, yet nevertheless can be treated. It weakens the bone structure, resulting in frequent fractures, along with severe fatigue, recurrent infections and aching bones. It can also impede adequate organ and nerve function.”
ABOUT THE INTERNATIONAL MYELOMA FOUNDATION LATIN AMERICA
The International Myeloma Foundation (IMF) is the oldest and largest organization dedicated to improving the quality of life of myeloma patients and their families. It has 200,000 members in 113 countries, including Brazil.
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