How America's Second Largest Cancer Charity Changes (and Saves) Lives
How America's Second Largest Cancer Charity Changes (and Saves) Lives
“Cancer is a frightening diagnosis,” said Louis J. DeGennaro, Ph.D., who worked for decades in cancer drug discovery and now serves as president and CEO of the Leukemia & Lymphoma Society (LLS). “It can rob an individual of their identity. It can rob them of their livelihood, their freedom, their family and their life. Our goal is to be there for patients all along the way, so they know that they're not alone and that they can access through us the very best treatment possible.”
LLS has invested more than $1.5 billion since 1949 to fund research into treatments for cancers of the blood and bone marrow, a broad categorization that includes 140 distinct diagnoses. It also provides support services to cancer patients and their families across all 50 states and serves as the “voice of cancer patients” in Washington and state legislatures through policy advocacy. TriplePundit sat down with DeGennaro, who most affectionately refer to as “Dr. Lou,” to find out more about how the second largest cancer-focused nonprofit in the U.S. works to meet patient needs — and learn what brands can do to help.
在治愈道路上资助尖端研究
仅2021年,美国食品药品监督管理局(FDA)就批准了令人惊叹的25种血液癌治疗方法。自2017年以来,FDA已批准了近100次新的血液癌治疗方法,其中70多个由LLS资助的研究源自LLS,这表明非营利组织的诀窍是确定创新以及近年来癌症研究的快速发展。
Degennaro告诉我们:“仅在过去五年中,这是一个了不起的结果。”“这是该领域的长期大量资金,包括LLS能够投入的系统,现在已经为患者支付了。”
Each of these new treatments will save countless lives — and every breakthrough potentially opens the door to the next generation of therapies.
Take for exampleCAR T-cell immunotherapy,革命性的治疗形式Degennaro描述类似于“星球大战医学”。CAR T细胞免疫疗法于2017年批准治疗白血病和淋巴瘤,重新编程了患者的T细胞(一种被称为免疫系统士兵的白细胞),以发现,攻击和消除癌症。它并不适用于每个患者,但是当它这样做时,结果简直就是奇迹。
“I have witnessed this — patients have gone literally from their deathbeds to, in days or weeks, being cancer free,” DeGennaro said. The first group of patients who received the treatment in clinical trials recently celebrated a decade without cancer. “For this group, it has kept them cancer free for 10 years,” he continued. “Some people would call that a cure.”
十多年前的另一项重大创新引入了这种靶向疗法:伊马替尼(Imatinib),品牌Gleevec,该品牌Gleevec于2001年批准用于治疗慢性髓细胞性白血病 - 将曾经致命的诊断变成大多数患者的疾病。
Rather than a prognosis of three years to live, patients with chronic myeloid leukemia can now treat their cancer at home with two pills a day — allowing them to live healthy and productive lives without ever receiving chemotherapy or radiation treatment in a hospital.
One of those patients is Mel Mann, who beat chronic myeloid leukemia in the late 1990s after receiving Gleevec as part of a clinical trial. Mann recently appeared on an LLS podcast alongside Dr. Brian Druker, a physician researcher at Oregon Health Sciences University whose work in the development of Gleevec saved his life. “I’m glad that Mr. Druker spent so much time in the lab, because if he hadn’t been burning that midnight oil and really studying this issue, I wouldn’t be here. It’s just plain and simple,”曼恩在LLS播客的血统上说在九月。“我能够看到我的女儿长大并成为医生。我的意思是,这就像一个奇迹。”
The treatment has saved an estimated 350,000 lives globally since its approval.
Supporting cancer patients and their families when it’s needed most
尽管对未来治疗的研究至关重要,但LLS支出中有三分之二致力于为当今正在与癌症作斗争的患者提供免费服务 - 这些服务是广泛的。188bet上不了
The organization’sInformation Resource Center, staffed by oncology nurses and social workers, is available to answer patients’ questions in more than 150 languages and help guide them to the right treatment and the right physicians. For cancers that are more difficult to treat with approved therapies, oncology professionals in the LLSClinical Trial Support Center帮助患者确保其医生认为可以为他们工作的试验中。
通过仅在2021年就分配了2.4亿美元的财政援助部,患者就可以为他们的处方,治疗甚至支付家庭账单而获得帮助。LLS最近还推出了first series of scholarshipsawarded to blood cancer survivors so they can finish their education that may have been disrupted by their cancer treatment.
佐治亚州LLS奖学金冠军凯尔(Kyle)说:“我喜欢我通过他们的社区建立的联系。”188bet网址怎么打不开“即使我正在缓解,我也与许多我今天仍然与之交谈的好人相遇并建立了联系。”
该组织的一部分患者支持工作还集中在扩大服务不足社区的救生治疗方面。Degennaro强调说:“作为癌症患者的结果不应取决于您的邮政编码或薪水上的零数。”“我们必须提供与每个患者的访问权益。”
例如,Influential Medicine Providing Access to Clinical Trials (IMPACT) programspearheaded by LLS looks to ”partner with major medical centers and bring clinical trials into the community-based cancer treatment centers where, frankly, most patients are actually treated,” DeGennaro explained.
IMPACT provides funding to major medical centers to create a network of clinical trial sites at community-based hospitals and clinics.. The program kicked off at the Mayo Clinic Cancer Center in Minnesota, Vanderbilt University Medical Center in Tennessee and Weill Cornell Medicine in New York City. This funding will allow for the creation of clinical trial sites at community-based treatment centers across the upper Midwest and rural South, as well as in underserved urban communities in and around New York.
LLS还提供针对服务不足的社区量身定制的教育计划,例如Myeloma Link, a 5-year-old outreach initiative, seeks to raise awareness about the signs and symptoms of myeloma in underserved Black communities and increase access to optimal care and resources among Black myeloma patients and their families. Black Americans have at least double the risk of myeloma as any other race or ethnicity, and they often face additional barriers and lower access to care.
Policy advocacy
State and federal policy is another key lever to enable equal access to treatment for every patient. On Capitol Hill and in state houses across the country, LLS looks to be the “voice of cancer patients” and “help lawmakers understand where they can make a difference in the lives and the outcomes of their constituents,” DeGennaro said.
除其他努力外,该组织的癌症护理成本旨在发展所谓的“aggressive but feasible cost-cutting ideas” that would bring down costs for patients without sacrificing quality of care. And when bills related to cancer care — such as those impacting medical insurance or drug prices — come up for debate, more than 30,000 LLS-affiliated advocates volunteer to contact their representatives with more information about how the proposed legislation impacts patients.
品牌如何提供帮助
I was 7 years old when my father was diagnosed with Hodgkin's lymphoma, and I later learned through stories how bad it really got — how close we came to losing my dad, and how my mom managed to provide for the family while navigating the tangled labyrinth of insurance companies, billing departments, and healthcare providers that made up his treatment. My parents sure could have used the services that LLS provides, and they’re not alone. “I hear this far too often,” DeGennaro said, “and brands can certainly help us in raising awareness in the patient population. If patients don't know about us, we can't help them.”
Further, LLS looks to leverage the unique strengths of its corporate partners to better serve patients. For example, since “the pharmacist is becoming the frontline of blood cancer care,” LLSworks with Walgreensto create training programs for pharmacists so they understand patient needs — and the latest treatments — better, DeGennaro said.
LLS has also worked with Subaru of America since 2016 through a partnership that makes use of the automaker’s偏爱社区慈善事业188bet网址怎么打不开as well as its network of auto retailers from coast to coast. Subaru is the largest automotive donor to LLS. Each June as part of the斯巴鲁喜欢照顾主动, employees from Subaru retailers across the country and local LLS staff come together to visit cancer patients, offering words of encouragement and handing out blankets.
众所周知,化学疗法治疗室很冷,而且“不仅仅是毯子,” Degennaro告诉我们。“在毯子的意义上有很多意义,但这是支持这种伙伴关系的支持,个人联系。”自2016年以来,Subaru和LLS已分发了超过230,000个毯子,以及31,000多种针对年轻患者的手工艺套件,以及成千上万的希望。
“We're always leading with what we can do for patients,” DeGennaro said. “We're trying to cure these diseases — and in the meantime, while we're at that, making sure patients have the best outcomes and the best quality of life.”
This article series is sponsored by Subaru and produced by the TriplePundit editorial team.
Images courtesy of Subaru and LLS