Survive Cancer is focused on the education, facilitation, and navigation of cancer recovery from diagnosis through survivorship. We help patients find the best information to understand their disease and treatment options, and we enhance their search for the newest medical treatments that science can offer.
WHAT DO WE DO?
Often when someone is diagnosed with cancer, his or her life – along with the lives of family and friends – is thrown into utter shock and chaos. Cancer patients may not know where to turn and may, all of a sudden, find themselves caught up in the complicated and confusing world of the “medical industrial complex.” They may even feel out of control in a system that takes charge of their lives and pushes them into making choices without understanding why. All of this stress may take a huge emotional toll on the patients and their family members, which may ultimately affect patients’ progress and treatment outcome.
Survive Cancer was created to provide, in a very user-friendly way, the highest level of knowledge and guidance to cancer clients, their family, friends, and healthcare providers. That includes a more global understanding of the myriad of new and standard-of-care options available as a result of advances in cancer diagnosis, treatment, and management – options such as clinical trials with potentially groundbreaking treatments. With comprehensive, up-to-date information and insight into their disease, clients can make better decisions about their treatment, with the goals of optimizing their chances of survival and maintaining the highest quality of life during this most difficult period.
We do not, however, simply refer clients to online sources or hand them stacks of possible contacts. Instead, we want our clients and their support members to ask questions to become as knowledgeable about their disease and treatment options as they choose to be. We are a team of healthcare providers with over one hundred years of combined experience in direct oncology care and of individuals with expertise in scientific research and clinical and business practice. We have an exemplary extended network of global advisors from the scientific research, medical, and corporate world. Through our experienced professional staff, we work closely with our clients and their support groups to empower them to take charge of their disease instead of feeling like a victim
As a nonprofit organization, we provide these services at no charge to the cancer patients. We believe that access to – and understanding about – information regarding cancer treatments and management should not be limited by type of insurance coverage or ability to pay.
WHO DO WE SERVICE?
We work with people who have been diagnosed with cancer and who wish to seek all possible global recovery opportunities.
WHERE ARE THE INDIVIDUALS WE SERVICE?
Since we work with survivors in a very personal way, we will begin locally and regionally, in our home base of Connecticut. As we grow in advisors and counselors throughout the nation, we will expand the reach of our organization.
DOES ANY OTHER ORGANIZATION PROVIDE A SIMILAR SERVICE? IF SO, HOW ARE WE
To our knowledge there are no major organizations that work as we do. It is true that in recent years an explosion of medical information, including about cancer, has become available online. For instance, the U.S. National Library of Medicine, an arm of the federal National Institutes of Health, maintains the website clinicaltrials.gov, which – at the time of this writing – lists nearly 66,000 cancer-treatment trials throughout the country and the world, which are recruiting patients, gearing up to do so, in progress, or recently completed or suspended. Other government agencies such as the National Cancer Institute (www.cancer.gov), well-known
nonprofits such as the American Cancer Society, and clinical providers such as the Mayo Clinic and Memorial Sloan Kettering also offer a wealth of information, again free of charge. Many organizations at all levels – national, regional, and local – aim to inform and support individuals with specific types of cancer. Examples are breastcancer.org and the Lustgarten Foundation, for pancreatic cancer.
But so much information can easily leave patients confused about which sources are reliable and overwhelmed at the prospect of sorting through them all. As a result, medical concierge services have developed. Often for a considerable fee – which may or may not be covered by insurance – these services will consult with patients and assist them in navigating the information and making decisions about the treatment and care options to pursue.
Survive Cancer aims to provide that level of information and guidance without charging patients anything – so they can focus on surviving their disease, not on being weighed down by the stress of bills they and their families may not be able to pay.
WHAT WE DO NOT DO?
We do not diagnose, treat, or provide second opinions for cancer.
HOW DO WE DO IT?
We will meet with prospective clients and their families for an initial evaluation to assess how we might help. That intake will include a checklist, similar to the following, asking clients where they are with their disease.
WHICH OF THE FOLLOWING STATEMENTS BEST FITS YOUR SITUATION?
"I suffer from symptoms that could be indicative of cancer and I don’t know which specialty physician to consult with and where to go next. I might have a suspected cancer diagnosis. My physician has ordered some tests. I’m looking for information about cancer and which possible disease I might have, as well as general information about diagnosis, prognosis, and treatment options and how/where to potentially obtain a second opinion."
"I have a new cancer diagnosis, and my physician or physicians have described different treatment options. I’m looking for additional information that enables me to choose wisely among those options. I have been treated for cancer in the past and the cancer has come back. I’m looking for information for the best available treatment option."
DO YOU HAVE ANY RECENT LABORATORY RESULTS, AND/OR PATHOLOGY REPORTS AVAILABLE?
At the initial meeting we will also explain the concept of a “cancer navigator” – a relatively new role. Many healthcare centers have, with the goal of achieving “patient-centered” or “individualized” cancer care, created cancer navigators to assist patients as they get tests, access treatments, and so on. These navigators can be nurses, social workers, lay staff, or volunteers. Although they do support patients, it is important to understand – as we will explain to our potential clients – that navigators typically work within a specific healthcare system and do not venture outside it. We will emphasize that the navigators at Survive Cancer will not just look at options offered by one hospital or one healthcare system, but will incorporate a variety of treatment modalities and options, utilizing all national hospital, university, and medical center networks, pharmaceutical companies, laboratories, biomedical sciences (such as genomic testing of cancers) – as well as holistic options, such as yoga, massage, and nutrition, that can maintain quality of life.
If Survive Cancer and the client mutually decide we can be of assistance and the individual would like to retain us, we will create a plan, which will include a schedule of in-person and telephone meetings with client and family. With the client’s permission we will also meet with the client’s oncologist. We will make a best effort to locate, in coordination with the client’s treating physicians, cutting-edge treatments including ongoing clinical trials. If the client is unhappy with his or her treating oncologist or has not yet found one, we can facilitate finding good matches for the client in terms of geography and quality of care for the best treatment
Throughout our work with a client, we will make clear that he or she is ultimately the navigator of his or her own ship. The role of Survive Cancer is to help clients understand their course, be certain they are aware of options, educate them, and support their journey toward healing and wellness.
WHERE WILL OUR FINANCIAL SUPPORT COME FROM? WHAT IS OUR FUNDRAISING PLAN?
Because most people have been touched by cancer in some form – either through a diagnosis themselves or through that of a loved one – we estimate there will be a broad base of contributors at all financial levels. Since cancer strikes rich and poor alike, we will call on (though not require) wealthier clients to donate. We will pursue grants and donations from corporations and foundations designated to causes like ours.
Members of our team have already approached donors who are enthusiastic about our purpose and approach. Our president is currently on the board of directors of Gateway for Cancer Research, a well-established nonprofit that funds phase I and phase II clinical trials in cancer; he will work with several of their key fundraisers and managers who have expressed an interest in the focus of Survive Cancer.