September is a busy month for cancer awareness. Most readers probably do not know that September is blood cancer (lymphoma, leukemia, and myeloma) awareness month. It also is childhood cancer, ovarian cancer, thyroid cancer, and prostate cancer month. Within this month are various cancer awareness days. For example, September 15 is World Lymphoma Awareness Day and September 22 is CML Awareness Day. There is a large overlap between childhood cancer and blood cancer as leukemia and lymphoma are among the most common cancers I children.
Most readers know that October is breast cancer awareness month. Even if you did not know it, you will not be able to turn on the television, surf the internet, go to a Chicago Bears football game, or even shop at a store during the month of October without hearing about breast cancer, seeing pink ribbons, or buying products that promise to contribute a portion of the price to breast cancer research or programming. Blood cancer awareness activities simply do not measure up.
Kudos to those responsible for the tremendous awareness associated with breast cancer! Your Chicago Cancer Examiner – like nearly everyone else – has friends and family members impacted by breast cancer. We would not deny breast cancer a single public service announcement or a single penny for research. Of course, as with all causes, we are interested in making sure that the money people think is going to breast cancer research and programming actually is going to such programming and is used efficiently.
Those of us impacted by blood cancers and other cancers can learn a lot about the steps that we need to take to ensure blood cancers get more publicity, awareness, and research such as that realized by breast cancer. October serves a stark reminder that we need to do so much more for the cancers recognized in September. Last year, for Blood Cancer Awarenes Month, we provided information on blood cancer. In this column, we compare breast cancer to blood cancers and outline some things that survivors can do to help raise awareness and help people impacted by blood cancers. The bottom line is that those of us impacted by blood cancer must do a much better job in raising awareness and money for research than we have in the past.
Breast cancer has a competitive advantage: In an ideal world, contributions of money and awareness to one good cause would not diminish publicity or awareness going to another worthwhile cause. Certainly there is room to grow overall contributions to cancer research, educational programming, and public awareness and that is something that cancer survivors and advocates must strive to achieve.
But in this world of economic struggles, unprecedented government deficits and debt, and limited free public service announcement time on major media outlets (many of which are losing ratings and dollars due to competition from satellite radio, cable television, the internet, and social media), cancers are competing for limited charitable contributions, government research grants, and media attention. Charities with existing relationships are more likely to retain air time than new ones are to obtain air time. Programs currently funded by the government are more likely to maintain funding than new ones are to gain funding. Private donors – individuals and companies – are struggling to honor existing charitable commitments. For all of these reasons, it will be difficult for blood cancer advocates to catch-up, but this is not a competition. The real goal is to increase awareness, education, and funding for blood cancer research in absolute terms.
A less tangible cause to market? In seeking to understand the enormity of the breast cancer awareness advantage, one must consider that breast cancer has some tangible advantages. Breast cancer is easy to spell, is easy to pronounce, and has a name tying it to a specific, readily understood and admired body part. Lymphoma, leukemia, and myeloma – in contrast – are more difficult to spell, harder to say, are less easily understand, and are more difficult to relate to a specific body part. Lymphoma, leukemia, and myeloma (which are more commonly used terms than blood cancer) do not have the word cancer in them. In fact, after more than fourteen years of advocacy, it still astounds me that so many people know someone with these diseases and yet so few know what lymphoma, leukemia, or myeloma are or even that they are cancers. But the awareness disparity between breast cancer and blood cancers, of course, does not lie in these differences.
The main difference is that breast cancer has become a cause celeb and a popular cause for many celebrities and politicians alike because of tremendous work on the part of breast cancer advocates and survivors in marketing, educating, and working the political process.
The enormous impact of all of these cancers: There is no question that breast cancer and blood cancers alike exact a tremendous toll in terms of morbidity, mortality, economics, and humanomics. According to the American Cancer Society, it is estimated that 229,000 cases of breast cancer will be diagnosed in America in 2012 (all but 2,190 in women) and 39,920 will die from breast cancer in 2012. As of 2008, there were 2.8 million breast cancer survivors in the United States. In Illinois, 1650 women will die from breast cancer in 2012
By comparison, there are approximately 1 million blood cancer survivors in the United States. It is estimated that, in 2012, more than 148,000 will be diagnosed with blood cancer (79,190 lymphoma, 44,150 leukemia, and 21,700 myeloma), and 54,380 will die from blood cancer in the United States. In Illinios, 990 people are expected to die from leukemia and another 760 from non-Hodgkin lymphoma alone.
Considerable progress has been made with respect to survival for all of these cancers. The 5 year survival rate for breast cancer is the highest for these cancers, climbing from 75% in 1975-1977 to 90% in 2001-2007. The 5 year survival rate for non-Hodgkin lymphoma climbed from 47% in 1975-1977 to 70% in 2001-2007. Leukemia had a 34% 5 year survival rate in 1975-1977 and 57% in 2001 to 2007. The 5 year survival rate for myeloma was 25% in 1975-1977 and 41% in 2001-2007.
You must reach your own conclusions, but more people die from blood cancer than breast cancer annually and the difference between the numbers of people diagnosed with these cancers does not appear to justify the enormous research funding and publicity advantage that breast cancer enjoys over blood cancer. Based upon the survival rates, research and awareness does make a difference.
We have grouped the three categories of blood cancer together and it is fair to ask whether it is appropriate to do so. However, the awareness efforts for breast cancer are, in large measure, aimed at breast cancer as a whole and there are various forms of breast cancer. Once again, the point is not that there is too much awareness or too many assets devoted to breast cancer. The point is that blood cancer is grossly underpublicized and far too little money is spent on blood cancer research.
The awareness and funding disparity: It is difficult to quantify the disparity between breast cancer and blood cancers in terms of awareness and funding, but the great awareness disparity is undeniable. A couple of examples illustrate the research funding disparity between breast and blood cancers. In 2010, the American Cancer Society awarded nearly $32 million in breast cancer research grants as compared with $7.1 million for childhood cancers, $10 million for leukemia, and $5.6 million for lymphoma.
The National Cancer Institute funded $635 million in research on breast cancer in 2011 as compared with approximately $421.5 million in combined blood cancer research ($227 million for leukemia, $13.3 million for Hodgkin lymphoma, $126.3 million for non-Hodgkin lymphoma, and $54.9 million for myeloma).
Blood cancer deserves more publicity and research because blood cancer research is the super highway to curing cancer: Blood cancer awareness and funding must be increased dramatically by virtue of the number of people impacted. However, the transformative nature of blood cancer research further compels devoting considerably more resources to blood cancer research. There is synergy in cancer research and developments often transcend a particular cancer. While breast cancer research also provides synergistic benefits, as we have pointed out on many occasions, blood cancer research is the super highway to curing cancer and Chicago has played a significant role in medical developments.
So many cancer treatments and developments have come from blood cancer research, including: chemotherapy, radiation therapy, combination chemotherapy, stem cell transplants, monoclonal antibodies, and staging. Tamoxifen, which has been used as a treatment for breast cancer, also was developed through lymphoma research. There are many reasons that blood cancer research has been supremely productive, including the accessibility of blood and the fundamentally important role of the immune system in the development and defeating of cancer. Lymphomas and some leukemias actually are cancers of the immune system.
With blood cancer awareness on the calendar this month, here are some things to keep in mind. These points apply to other cancers as well. The overriding message is that it is incumbent upon cancer patients, survivors and those who love them to cure cancer.
Go to the best doctors and get the best treatments for your cancer: The most important decisions that a cancer patient will make are the selections of their physicians and their treatments. This may be based largely or almost entirely upon advice, information, and recommendations from others. But ultimately these are the cancer patient’s decisions and it always is the cancer patient that will suffer or be the beneficiary of the decisions. Patients must be well-informed, active in their treatment, obtain second opinions, consider clinical trials, and surround themselves with people who love them and will look out for them. First and foremost, patients must get through their treatments and take care of their own health. Participation in clinical trials is a major way in which patients advance medical science in the process of helping their own conditions.
Join organizations, organize, and unite: Awareness is critically important to saving lives and to invoking the people and assets needed for better treatments and the cure. Awareness and education about symptoms helps save lives though early diagnoses and treatment. Awareness is important to elicit people, companies, and resources into action to fund education and research. For almost every type of cancer there are organizations engaged in education, advocacy, and research funding. Consider working with smaller organizations led by volunteers impacted by cancer. At the margin, your time, leadership, and fundraising contributions are likely to have more impact and be more appreciated. If there is a void that existing organizations will not fill, consider starting your own program or organization. For most people, however, the option of working with an existing organization is a better and more efficient option. The accompanying video provides an overview of the activities of Chicago Blood Cancer Foundation.
Engage in educational, awareness, and fundraising activities: You do not have to form an organization. You do not have to give away your wealth to find a cure. But when, and to the extent you are able to do so, make some significant contribution to help others battling cancer. Whether it is assisting in the advancement of public awareness or knowledge, funding the search for better treatments, or talking to or mentoring people suffering from cancer, in some way, make a difference. Do not do it because it is noble or the right thing to do—although that certainly is the case. Do it for selfish reasons. Do it because if your cancer returns or someone you love gets diagnosed down the road there will be more effective or less toxic treatments available or even a cure. Do it because it is a way to be empowered and to lose the feeling of being victimized by cancer. Do it because you will meet so many wonderful people and you will be given so many meaningful gifts that money cannot buy. People react differently to cancer. Some wish to avoid remembering or thinking about cancer, in some ways we all do and who could blame us. But even those who “move on” and distance themselves from cancer or people afflicted with the disease actually are stuck. Rise above focusing upon your own circumstances, condition, and pain. Notwithstanding the truism that no good deed goes unpunished, helping others will help you.
There is an old adage in fundraising: “people give to people.” So when you are asking others to donate or participate they may not do their own research on the charity, but are supporting you in your efforts and are relying upon your judgment in selecting the cause or event. For those who are afraid or hesitant to ask others to contribute to the cause, remember you are not asking them to give money to you, you are asking them to do something that will benefit society. You would be surprised by the generosity of people. Still, be reasonable and remember that people have financial constraints and other causes to support. There is no magic to fundraising, advocacy, and fighting cancer. Cancer survivors and their families are much more effective than professional fundraisers and organizational staff. To professionals, it is often just a job. To survivors and family members, it is a passion and a mission.
Cancer survivors in general and blood cancer survivors in particular are too stoic and quiet. We need to make more noise and have our voices heard. Lymphoma, leukemia, and myeloma are under-publicized disease. This must change and we must change it.
Public policy advocacy: Public policy advocacy is an important component of our curing cancer arsenal. There is some merit to simply contacting your senators, representative, governor, and the White House and demanding more money be appropriated for cancer research. But public policy advocacy is much more effective when you are requesting a particular action. A “dear colleague” letter, a vote on a specific bill, or request for a hearing on a particular issue is much more likely to be effective.
Many cancer organizations and medical institutions have people who monitor legislation and generate a legislative and public policy agenda. One way to keep informed of developments and to have an impact is by working with an appropriate non-profit cancer organization. They usually welcome volunteers and provide training and information. But before you invest too much time, make sure that the organization’s agenda is something that you actually support and actually supports your mission.
Effective public policy advocacy boils down to: (1) having a specific request or agenda; (2) contacting the correct officials (those capable of supporting or advancing your request); (3) having the best person contact the public official (the contact hierarchy is someone with a personal relationship with the public official or aide, a constituent, an invested advocate such as a patient, survivor, or family member, and a non-profit staff person); (4) providing the appropriate information (the specific bill, letter, bill language, background, and research information regarding the cause and request) and appropriate background; (5) determining the best manner and time to communicate (letter, e-mail, call, or appointment); (6) “making the ask” and properly communicating the request (streamline and organize the presentation); (7) following up; and (8) enlisting as much support as possible—the more calls, letters, and emails, the better.
These folks are very busy and have competing demands for their time and attention. Respect their time. Be respectful to them and be professional. Be clear, direct, and organized in your presentations and communications. Unless you are a “one legislation Charlie,” develop relationships with the public official and staff. This makes it more likely your communications will be received and acted upon.
Actually, public policy advocacy on health-related issues, particularly cancer, in some respects is easier than in some other areas because cancer is something that impacts so many people and it is a subject that generally is non-partisan in nature. We have found widespread support from Democrats, Republicans, and Independents alike. The main limitation we confront is that “there is only so much money to go around.” Our job is to make funding for cancer research a greater priority and to fight to make this a reality. This is part of the national call to action to cure cancer.
The landscape has changed somewhat over the years. In particular, the internet and social media have empowered patients and provided great platforms for raising issues and becoming aware of issues, engaging and activating others to engage on issues, and getting out the “word” directly. Increasingly, more and more decisions impacting patients are made by non-elected government bureaucrats. Getting the attention and proper response from these folks can be a frustrating, time-consuming, and challenging process.
Chicago will educate the world about follicular lymphoma on September 15. Chicago Blood Cancer Foundation, Rush University Cancer Center, and Hope for Lymphoma are puttnig on a free patient and caregiver educational symposium with 12 world class physicians. Follicular Lymphoma: On the Road to cure will be held at Rush University Medical Center (Searle Conference Center) in Chicago on Saturday, September 15, 2012 from 8:15 a.m. until 2:40 p.m. and will include free breakfast and lunch. Space is limited, so register today. Visit Follicular Lymphoma: On the Road to Cure, for information (including the agenda) and registration. Plans are underway to broadcast the symposium worldwide live on the internet at www.chicagobloodcancer.org and www.road2cure.com.