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Slide #1
Suzanne Bliss: We are going to move forward now with our advocacy presentation, and as I said to you yesterday, one of the nice things about our merger was that it allowed us to look at the talents of the staff that we had and sort of rearrange things a little bit and be able to, I think, get some real efficiencies in terms of being able to use those talents in a little bit different way than perhaps they had been in the past, and that's a long way of saying I'm about to introduce you to Melanie Smith, who is our director of public policy and advocacy. Melanie had joined the East Coast group, the Cure for Lymphoma Foundation, in the year 2001, and she really came on to do all our patient education and services. And then when we merged with our West Coast group, the Lymphoma Research Foundation of America, we moved all of our patient education and support services out to the Los Angeles office, and Melanie took over in New York as our Director of Public Policy and Advocacy.
She's had a year to get her feet wet and to get down to Washington and to meet some people, and she's just done a really outstanding job. And now, with the formation of our chapters, we see advocacy as really a program that we can start to use at the chapter level and really get the outreach, the grassroots support that we need so badly. So, Melanie, I'll turn the program over to you. [APPLAUSE]
MELANIE SMITH: Good morning, everyone. I wanted to, before I start this session, sort of revisit something that Sue said yesterday morning at the start of this program, and that is that over 550 people are registered this weekend, and they represent 32 states. I think that is just amazing, and I think that it demonstrates the commitment and dedication and the efforts that the lymphoma community is willing to undertake in an effort to learn more about this disease, whether you're a patient or a family member, a caregiver or a friend, somebody you might know who has the disease, and learn more about the treatment options that are available to you, just as we heard those wonderful reports about clinical trials. What do they mean, and are they for you and your disease? Some of the decisions that you face and the options that are available to you are made by decision-makers in Washington, D.C., and that's really in a nutshell what advocacy is all about.
I know that I've spoken with many of you throughout the weekend, and there are several well-seasoned advocates here. There are also a lot of folks who really just want to get their feet wet, or at least sort of spark their interest about advocacy and what it is and how it relates to you. So today's session really is just an advocacy 101 briefing, as I like to call it. I'm going to first start off with a definition of advocacy, and then look at why advocacy might be something you're interested in getting involved in, as well as talk about LRF's mission and how it relates to you as a patient, a family member, a caregiver. And I'm then going to provide a case study example, because I think that's really a great way to show you about efforts, when they're undertaken in an effective manner, really can help to create a difference.
Slide #2
So, what is advocacy? Well, quite simply, it's the act or process of supporting a cause or a proposal, taking action on a piece of legislation or a regulation, a public law, an effort, a movement or a cause.
Slide #3
Why advocate? Well, governmental policies, such as regulatory and legislative activities, have an impact on you as a patient, a family member or caregiver. More specifically, funding for lymphoma research, access to new therapies, certainly efficient regulatory review falls under that category, as well as prompt an adequate reimbursement. And I'm going to go a little bit more in detail of that in a bit and education and awareness programs.
Slide #4
Advocacy influences regulations and legislation. Lawmakers, quite frankly, represent you. They are elected public officials, and they want to hear from their constituents. What are their issues and their concerns? Federal agencies are also open to a dialogue with organizations such as the Lymphoma Research Foundation, and often reach out to us and want to hear our input and ideas representing the lymphoma community. Agencies such as the National Institutes of Health and the Food and Drug Administration are very good about that.
Slide #5
So let's sort of backtrack for a minute and think about what LRF's mission is.
Slide #6
Our mission is to eradicate lymphoma and serve those touched by the disease. We sponsor education programs, obviously, like the one we're at here this weekend in Los Angeles. We have them throughout the country at various locations during the year. We also have a fabulous patient services department that responds to individual questions and concerns.
Research: Together, the Cure for Lymphoma Foundation and the Lymphoma Research Foundation of America have funded over $8 million in lymphoma research at 158 institutions across the country. That's something that we're obviously very proud of and is core to our mission.
Advocacy. Well, here we are today talking about advocacy, and certainly we undertake a national effort to represent you as the lymphoma community in terms of issues that are of concern to us. All of these areas really working together in synergy, if you will, help us to reach our mission, which is to find a cure for lymphoma.
Slide #7
Well, what is effective advocacy? I often talk to people who say, "I really want lymphoma to be like X-cancer-specific-disease community in terms of their advocacy efforts," and I think that there's a lot that we can learn in terms of emulating certain aspects of other folks' advocacy efforts and how we can be effective.
Slide #8
Effective advocacy is coordinated, it's structured and it's unified. It includes both direct advocacy by the organization itself, as well as by grass tops, which are leaders at the community level, as well as grass roots, individual constituents.
Obviously, in order to have an advocacy effort that is effective, you need to identify advocates. We need to know who these people are who are willing to take action on issues that affect them, and it must also be national in scope, again, including leaders at the community level and individual constituents. I'm going to talk more about identification of advocates at the end of this session regarding a specific call to action and what you can do today and help us in that effort.
Slide #9
It is critical in order for advocacy to have an impact to be timely. It must also facilitate messages that are relevant to key decision-makers in Washington, D.C.
Slide #10
A website, our website is www.lymphoma.org. In order for that to be effective, and any other website that you visit, it must be well-organized. It has to be chock-full of information, and it needs to be easily accessible in terms of your understanding of that information.
Slide #11
Educating the community is obviously critical to informing people about issues that affect them. LRF will do that, and a quite concerted effort through our chapter trainings. As our chapters roll out, I'll be going to the trainings and really just presenting an advocacy module, if you will, in terms of identifying what advocacy is in a little bit more detail and how you can be helpful in this effort for increasing awareness about lymphoma. Obviously, our website, as I just mentioned. Our newsletter comes out quarterly, and education programs.
Slide #12
So sort of to sum it all up, effective advocacy is necessary in order to maximize influence on public policy decisions that are critical to you.
Slide #13
I'm now going to talk a little bit about a case study example there that affected the entire cancer community. About ten years ago there was a concerted effort to bring attention to an issue that affected cancer patients. Medicare coverage prior to June 2000 was silent with respect to covering routine patient care costs that were incurred during a cancer clinical trial. Medicare carriers occasionally denied coverage of physician services, laboratory tests, outpatient hospital services, and that was a problem, because it really was a barrier to folks who were going through the decision-making process with respect to, "Do I want to enter a trial?" It's important to point out that this lack of clarity really was a problem for patients, because it was solely provided within the context of a trial, where coverage and reimbursement was at risk.
Slide #14
The result of this, as I said before, really was a barrier to patients clearly not knowing whether or not you'd be held responsible for certain charges if you decided to enter a trial. It certainly would impact your decision to do so.
Slide #15
During this very long effort that really lasted over a decade, there was legislation that was introduced in three separate Congresses. Each Congress lasts for two years. We're about to come to the end of one of them very shortly. And the initiative behind this ten-year education process was, the last time it was introduced, was called the Medicare Cancer Clinical Trials Coverage Act. The legislation was aimed at Medicare, because Medicare beneficiaries account for over half of all cancer diagnoses. It really started with a process of making the case, collecting data, educating members of Congress and their staff about the importance of clinical trials. A decade ago, the learning curve with respect to cancer trials was in a completely different place than it is today. Although we know we have, certainly, a ways to go, it was really a separate place that we were in with respect to clinical trials. There was not a great understanding by members of Congress on this issue. Really, not to fault them, but it was clear that there was an education process that really needed to take place in order to secure support for changing this problem.
Slide #16
This is a bill. It is a piece of paper. Sometimes people often wonder what a bill looks like. This is S381. It was introduced in the Senate. This is the number that the bill received the third time it was introduced. Rockefeller and Senator Connie Mack from Florida introduced the legislation in the Senate, and Representatives Nancy Johnson and Ben Cardin spearheaded the effort in the House of Representatives. It was a five-year study looking at the feasibility of covering routine patient care costs for Medicare beneficiaries who were diagnosed with cancer and were involved in certain approved clinical trials.
The eligibility of coverage of trials was based on approval of the trial design by several high-quality, peer-reviewed organizations, including the National Institutes of Health, the Food and Drug Administration, the Department of Defense and the Department of Veterans' Affairs.
Slide #17
So again, the problem being that Medicare carriers are occasionally denied coverage of physician services, outpatient hospital charges or laboratory tests on the grounds that they are provided within the context of a clinical trial.
Slide #18
The time was ripe for change in June of 2000. We were about to enter a midterm election, as we are very shortly now. The education process that took place over several years was quite comprehensive, and this was not one that was undertaken by the lymphoma community itself. It was embraced by the entire cancer community. There were many, many conversations in meetings that took place with members of Congress and their staff, again, to address the learning curve issue with respect to clinical trials.
Advocates motivated and were obviously very effective, and communicated in an organized, structured and coordinated manner.
Slide #19
In June of 2000, President Clinton signed an executive memorandum. After that memorandum was signed, there was a long regulatory process that took place.
Slide #20
I think that it's important to sort of revisit again why this was a successful effort. One was that it captured the commitment, dedication and passion in a structured, organized and focused manner to help us achieve our mission, and we can learn from the examples of the past and how we can improve upon them in the future.
Slide #21
So what do we do for advocacy? Well, we have a public policy committee. It meets several times throughout the year. It is chaired by an individual who is both an attorney by profession and gets involved with our foundation with his free time. He is also a survivor and he's been a tremendous help to moving our advocacy efforts forward. We also have a grassroots network, Lymphoma Advocates, and the flyer that was on your chair this morning, if you could just take a look at it, we are in the process of upgrading our technology and our website, and prior to that happening, it would be helpful if you could please fill out your name, address and e-mail. It's absolutely critical in order for us to communicate with you in a timely manner to have e-mail. If we don't have e-mail, that's okay, but it certainly makes it an efficient process for us in communicating with you and vice versa.
Once we upgrade our technology, we will be in contact with you and ask you to please come back to our website, which is, again, www.lymphoma.org, and register to become a lymphoma advocate. Right now we don't have the capability online to have folks register, but we will in the near future. I want to make sure that you take advantage of that.
Slide #22
I wanted to take a moment and give you sort of a sneak preview in terms of areas that we will likely be pursuing next year in terms of 2003. We are currently going through an evaluation and planning process for next year, and these are some areas that we're very interesting in moving forward with and will likely have some concerted advocacy efforts related to. One is research funding. Two is the blood cancer bill. For those of you who came to Washington during our collaborative blood cancer advocacy days this year in April and May, the blood cancer bill, which is also known as the Hematological Cancer Research Education and Investment Act and you will not be quizzed on that--of 2001 was passed in the house while we were in town, which was just amazing, and that bill was signed by President Bush shortly thereafter. It was an authorization bill providing both education programs and some research programs. We would like to see some funding put behind that public law so that these programs can actually have some money behind them and come to fruition.
Access to new therapies is certainly something that we are very attuned to. There was an article in the newsletter, the most recent one, that most of you may have already received. If not, you should be receiving it shortly in the mail -- with respect to a new radioimmunotherapy that has come to market called Zevalin. This drug is approved by FDA. It was approved earlier in the year, and I heard from many advocates and health care providers that there were problems accessing this treatment, partly due to, in fact, a reimbursement problem. And more specifically, once FDA approves a drug, there is a time lag, after which FDA approves the drug and when the drug can be reimbursed by the Centers for Medicare and Medicaid Services, which is the federal regulatory agency regarding Medicare and reimbursement for services provided under that program.
The C code, which is required for hospitals to receive reimbursement for that therapy when it's provided in the hospital outpatient setting was assigned to Zevalin as of October 1st, so access to this treatment should be improved.
Slide #23
And that sort of is a nutshell of what advocacy is and what we're doing to help you, and I'm happy to answer any questions if we have time. [APPLAUSE]
Q: [OFF-MIKE -- INAUDIBLE]
MELANIE SMITH: You can give them to me. Okay, sure, you can leave them up front at the registration desk, and I'll be sure to collect them. And we will take that information and input it into our current database. And as soon as we upgrade our technology, I'll be sure that you're notified that you can come to our website and register online to be a lymphoma advocate, and then we can really start a communications effort that I think is going to be very timely. Yeah.
Q: [INAUDIBLE]
MELANIE SMITH: So the question is, what is LRF doing with respect to the expected cuts for -- I believe she's talking about the hospital outpatient perfected payment system and what we're doing in that effort. We're certainly monitoring this effort closely. The Lymphoma Research Foundation participates in an umbrella organization called the Cancer Leadership Council, so we come together as a community on a monthly basis, and this is certainly something that we're very interested in in terms of representing lymphoma patients.
There is some effort underway. We have signed on to a letter to ask that those cuts be delayed until, I believe it's July, so that the Centers for Medicare and Medicaid Services can take a look at the impact of those cuts on cancer patients. There is some wiggle room, as we call it, with respect to the regulatory agency side, but I think for greater change there will need to be legislation that's introduced, and that has not yet happened. Yeah?
Q: Is this on? I wanted to say that I attended one of the blood cancer advocacy meetings in Washington, D.C. I come from Washington state, the other Washington, and before I went I wasn't at all sure that it would have any impact at all that people were noticing. But that was the -- I went two years ago, when the senator from -- the congresswoman who had myeloma --
MELANIE SMITH: Geraldine Ferraro?
Q: Yeah, that's the woman. Geraldine Ferraro spoke, and there were a lot of people there. What was so interesting to me was that five of us from Washington State came, a very tiny group, two with myeloma, two with lymphoma, one with leukemia, all of us survivors, and Patty Murray, our senator, stood up, and when she gave her presentation she said, "My constituents, I want to make sure they're in the room," she said. "They came all the way from Washington State." So she noticed, and people noticed. So I say this by way of encouraging people to participate in this kind of program.
MELANIE SMITH: Great. I think that you highlight something, obviously, that's really important to increasing awareness about lymphoma. And having to talk to people many, many times throughout the year with respect to how can we really increase attention to this disease, it's also important to note that you don't have to necessarily come to Washington to make your voice heard, and I know that making such a trip is certainly a tremendous experience for many people, but we'd certainly want to encourage you to contact those that represent you in their local offices. It's probably an easier trip for you all to make, and it's something you can do on a more frequent basis, and they welcome that input from you as well. Not to dissuade you from coming to Washington, of course, but it's another way that you can communicate with them, and we'd certainly encourage you to do so. Yeah.
JERRY CRUM: I usually carry fairly well, but I apologize. The idea I'm talking about here is Congress controls the pursestrings, okay? Congress funds the National Cancer Institute. So that's a basic concept we're working with here. And you have representatives from your state that are in the House of Representatives, that are in the Senate. Melanie Smith is a very nice person, and she's working very hard. She cannot substitute for you. My congressman from Nevada or my senators don't care a whole lot about Melanie Smith. They care about me. Why? Because I vote and I talk to a lot of people at home who vote. Those members of Congress want to look very good to their constituents, so that's a basic concept that we're working with here. There's no substitute for you. Melanie Smith can work extremely hard, LRF can work extremely hard. It can't substitute for you, so please get involved in this. [APPLAUSE]
MELANIE SMITH: Thanks for that passionate plea, Jerry. No more questions? Okay. I'm here for a couple more hours, and I'll be floating about, so if anyone thinks of anything that they have a question about or want to talk to be about, please do so. Thanks. [APPLAUSE]
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