wheeze flan: GUEST POST: Weaving the Threads of Mission at The Leukemia ...

The following guest post was written by Scott Riccio, vice president of advocacy and external affairs at The Leukemia & Lymphoma Society?s Washington, D.C.-based Office of Public Policy.

September was Blood Cancer Awareness Month, though we understand if you didn?t hear about it amid the shouting and name-calling coming from the campaign ads running almost non-stop these days.? Despite all the rhetoric, this is an important election for patients, as it will dictate how and where advocates need to engage to support improving access to cancer care.? At The Leukemia & Lymphoma Society, we remain focused on our mission: accelerating the development of new treatments and cures for our patients and working to ensure patients can access those new therapies.

After the election is over, you?ll start to see and hear more from LLS, but here are a few important facts you should know now.? LLS is the world?s largest voluntary health agency dedicated to blood cancer. LLS? mission: cure leukemia, lymphoma, Hodgkin?s disease and myeloma, and improve the quality of life of patients and their families. To carry out this mission, LLS funds lifesaving blood cancer research around the world and provides free information and support services to patients in need.

We spent more than $68 million dollars in research for the cure last year, bringing our total research funded since the inception of our organization to more than $875 million.? In one way or another, we have been part of the research that resulted in every blood cancer drug approved for patients today. Rituxan, Gleevec and Velcade are just some of the examples of targeted drugs which LLS-funded investigators have helped advance. Our current funding provides some of those dollars to brilliant researchers who are focused on the next generation treatments and cures for our patients, whether through targeted therapies to block cancer?s growth, strengthening the immune system to better fight off cancer, or making today?s therapies safer. Unfortunately, many great ideas and discoveries never make it to patients because researchers or small biotechnology companies are unable to get enough funding to move from research into clinical development, a challenge known as the ?valley of death.? To overcome this, our Therapy Acceleration Program funds small biotechnology companies directly, helping them cross that ?valley of death? and take a promising discovery forward, establishing ?proof of concept? through early clinical trials.

Most importantly, our research is delivering measurable results for patients. Survival rates for children with acute lymphocytic leukemia, the most common childhood cancer, have risen over the past 40 years from 3% to nearly 90% today. Hodgkin lymphoma patient survival rates have doubled to 86% since the 1960s, and the survival rate for myeloma patents has more than tripled in the past decade.

But there is still much more to do.

In addition to research, the second thread of our ?Mission? at LLS is patient services, which is where our 61 chapters in the U.S. and Canada, plus our Information Resource Center in White Plains, N.Y., really shine.? We provide support, resources, information, time, a caring ear and financial lifelines to patients who need an advocate. We are there every day for the nearly one million patients who are either in treatment for, or remission from, blood cancers. In fiscal year 2012, we provided more than $44 million in copayment support to help patients get the medications they need to fight for their lives. We respond to more than 70,000 phone inquiries that come into our IRC each year, publish monthly disease-specific eNewsletters for more than 200,000 subscribers, provide telephone and web-education programs to more than 250,000 participants and distribute more than one million pieces of educational material. We help children who have fought cancer transition back to school after treatment.

But there is still more to do.

Finally, the third thread of our Mission at LLS is advocacy and public policy. Blood cancer indiscriminately affects everyone; LLS believes that access to treatment should also be indiscriminate. LLS believes that every cancer patient should have access to the treatment regimens recommended by their physician and that patients should not suffer from cost discrimination based upon the type of therapy provided, the mechanism of delivery (oral, injectable, IV, or other) or whether the patient is enrolled in a publicly or privately funded health plan. At both the state and federal level, we are fighting to ensure that all plans establish Essential Health Benefits packages that protect the needs of cancer patients.

LLS is committed to ensuring access to and compliance with the most appropriate, evidence-based treatments for all blood cancer patients. Patients should be able to select the most clinically appropriate, cost-effective treatment options available for their particular disease. These decisions should be made without undue influence from finances, geography, race, education, or the host of similar factors that can influence such decisions now. We work with our chapters and patient volunteers to advocate our positions with state legislatures, Congress, FDA and CMS to ensure that the research and patient services that provide options and access for our patients are supported.

But there is still more to do.

We know that to be truly effective, personalized medicine must be tailored to reflect the individual mutations that drive cancer?s growth. Adequately addressing many cancers likely will require a ?cocktail? type approach to be effective, just as it has been in fighting HIV. The technology enabling personalized diagnosis is on the verge of becoming cost-effective. The life-saving potential of this approach and the challenges to its widespread adoption must serve as a call to action for all of us seeking cures for our patients today, not in some far off ?someday.?

Working differently, we can make that ?someday? be today.?Cancer-fighting charities are fragmented and lacking a unified voice, driven by years of old-school ?onco-politics? into protecting fundraising and research turf. However, today we are all presented with a unique opportunity. If the tissue of origin is not the key to fighting cancer but rather the gene mutations and defective pathways, it?s time for these agencies to join forces. A partnership between agencies focused on breast, colon, prostate, lung and blood cancers could collectively bring billions of dollars to bear in a focused effort to tackle the barriers that keep patients from being able to access the promise of personalized, and truly personal, cancer care.

Resources could be deployed to support regulatory science, the science of developing new tools, standards, and approaches to assess the safety, efficacy, quality and performance of FDA-regulated products. Clinician/scientists could be supported in efforts to design rapid and cost- effective clinical trials targeting genes, not tissues and enrolling patients with different types of cancer.

Regulatory officials overseeing both approvals and access could be given both the resources and the direction necessary to accelerate development and ensure access, better aligning those agencies with the needs of cancer patients in the 21^st century.?When medicine becomes more personalized, reducing the size of the patient population that can be treated by a particular therapy, we must adjust our thinking about how best to gather and analyze key data that would help guide regulatory decisions and ultimately treatment choices.?Patient registries that integrate patient care histories throughout the cancer survivorship journey can help us gather additional data that is critical to informing better policy for patients. We must remove the scientific and economic barriers to trials of novel drug combinations and make the development of personalized, small population therapies economically viable. This will bring more competition into the arena, allowing us to provide better treatments for patients.

We must act intentionally, with leadership and urgency, to make certain that someday is today.

LLS has made enormous strides over the years bringing us to the edge of cures. Therapies and treatments are now, at this moment, saving lives and improving the quality of life for many patients making this an extraordinary moment in time.

Someday we will cure cancer. For over 60 years we have been fighting for that day. Join us to make someday today.

For more information, visit us at www.lls.org or email advocacy@lls.org.?