Tuesday, January 27, 2015

Lymphoma Report Card

Well, once again, I'm looking at the calendar and realizing I haven't posted anything in a week. I've been reading a dense article on STAT6, which is a gene that seems to be very active in the kinds of processes that result in Follicular Lymphoma. That's the best I can do for you right now in describing it. Every time I try to sit down and focus on it, something else comes up. Blame it on new duties at work that are less predictable than what I was doing before. The next thing I know, a week has gone by and I haven't posted anything.

So I will ignore that article for now and turn to something else that's been sitting in my inbox for more than a week: The Lymphoma Coalition's Report Card for 2014.

The Lymphoma Coalition is an impressive organization made up of Lymphoma-related groups from around the world. There are several from the United States, including Patients Against Lymphoma (which runs Lymphomation.org), as well as the Leukemia and Lymphoma Society, Lymphoma Research Foundation, and others -- a total of 61 organizations from 45 countries. They share information about lymphoma with each other, and together serve as advocates for lymphoma research and awareness.

One of their big advocacy projects is their annual Lymphoma Report Card, which looks at data from around the world to help "tell the lymphoma story." Each year has a different focus -- in 2012, they focused on clinical trials and standards of care; in 2013, it highlighted the barriers that patients face. This year's report card focuses on treatments -- what is available, and who has access to those available treatments.

It's not exactly an uplifting report. I love to write about new treatments, whatever stage of development they are in -- pre-trial, phase III, in a clinician's hands, whatever. I try to be careful about reminding everyone that, as exciting as the results of a phase I trial might be, it could be a long time before we ever see that treatment being used, and there's always the possibility that it won't be used at all. But there's another warning that's necessary -- some available treatments just aren't accessible. Even though they have been approved, and shown to be effective, some are just too expensive or not well-known (or trusted) enough to get to the patients who need them. That's what the Report card highlights.

It's fascinating to me to see how so many different countries have access to certain treatments (like CHOP), but not to others (like Bendamustine or Ibrutinib), and which combinations are approved (some will allow Bendamustine on its own, but not with Rituxan, for example).

Some countries have clinical trials for pretty much every types of lymphoma, while some don't have any running for certain types (including Follicular Lymphoma -- in some countries, there is no new testing being done on newer FL treatments ).

Even worse, the statistics on physician awareness are not good. Lots of people are misdiagnosed at first, and given medication for conditions that have nothing to do with lymphoma. That's a problem no matter where you live.

Overall, the report calls access to care "sporadic," with lots of places around the world not able to provide diagnosis of lymphoma and proper care for patients, as well as access to trials. The Lymphoma Coalition is making an effort to address these issues.

And what can you do? Well, maybe this is the time to become a lymphoma advocate. As much as lymphoma-related organizations could use some of your money to help them spread their message locally, that's not always possible for patients. But I'm sure they could use your help in other ways -- by contacting the people who make decisions about lymphoma research and funding, and sharing your story.


Rodrigo Carvalho said...

Perfect comment, Bob.
Here, in Brazil, public sistem healph care (called SUS), only provided Rituxin for FL patiences last year!
Also, our FDA (named Anvisa) didn´t aprove Bendamustine yet. What a pity.

Marcella Quinn said...

Jeez, you want to try living in N Ireland and trying to find out whats the latest and whats available! Brilliant blog, much more useful than a a lot of the medical sites

Marcella Quinn said...

Jeez, you want to try living in N Ireland and trying to find out whats the latest and whats available! Brilliant blog, much more useful than a a lot of the medical sites