Giving Compass’ Take:
• Physical activity used as healthy coping mechanisms for individuals with adverse childhood experiences can help build resilience.
• More healthcare professionals are taking in account the social determinants of health and partnering with community organizations to help people who are struggling combat these hardships. How can donors help build bridges between health services and communities in need?
• Read about the right incentives to increase physical activity.
They refer to it as upstream. It’s where it all starts. That is, those things that influence how well we’ll be able to weather life.
Social determinants of health is another, related term.
But whatever the language, it all boils down to the fact that circumstances and conditions in our individual lives significantly affect our chances for staying healthy through the decades.I remember reading an article as a teen from one of my parent’s social work journals. It has stuck with me my entire life. The article asked the question: “What separates a child raised in poverty and adverse conditions who goes on to thrive later in life from those who don’t.”
More and more, physicians, medical centers, insurance companies and others within the U.S. health care delivery system are realizing that what happens in the doctor’s office or hospital cannot compensate for all the other factors that significantly affect a person’s health and well-being.
Many healthcare providers and payers, in fact, are taking action, partnering with community organizations and implementing programs to address the social determinants of health within the ZIP codes where they do business.
Organizations and those who care for the homeless are acutely aware of the importance of opportunity for physical activity in children’s lives. The effect of adverse childhood experiences is of grave concern for this population. ACEs put many of these kids at significant risk for health issues later in life — seven out of the 10 leading causes of death in the United States, in fact.
Yet, experts also assert that by instilling certain habits, healthy coping behaviors, and protective factors, we can help shield against some of the negative consequences of these early adverse experiences.
Read the full article about how excersize can help breed resilience by Helen Durkin at InsideSources.
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Cancer is not monolithic: The word refers to many diseases, with myriad causes, danger levels and treatments. But the most important thing to understand is this: We must continue the fight. Cancer is the second-leading cause of death in the United States (after heart disease), with about 600,000 fatalities each year and 1.7 million new cases expected to be diagnosed in 2018. It will likely affect you or someone you know, as 40 out of every 100 men and 38 out of every 100 women will be diagnosed in their lifetimes. Fortunately, there is hope, which we can accelerate through money, compassion and the full power of philanthropy. Supporting cancer research is one way to make an impact. Let’s explore where the opportunities are located. How Close Are We to Curing Cancer? The short answer is that we’re closer to a cure now than we were years ago, but not as close as we should be. Some positives: Cancer fatality rates in the U.S. have decreased by about 25 percent over the past two decades, going from a peak of 215 deaths per 100,000 in 1991 to 159 per 100,000 in 2015, mainly due to better preventative measures, early screenings and a reduction in the number of smokers in the country. Researchers have also developed promising new treatments such as immunotherapy, which harnesses the body’s self-defense system to attack the disease. Also, the National Cancer Institute (NCI) has an initiative called the Cancer Moonshot, identifying projects that can accelerate access to treatment, prevention and potential cures. IMPACT OPPORTUNITY: DISCRETIONARY FUNDS FOR CANCER RESEARCH Choosing an impactful cancer organization isn’t easy since there are so many options out there, but as longtime fundraiser Jon Kent writes, the key is to find the financing gaps. Know that private cancer foundations only account for a small portion of research funding in the U.S. And it’s not really close. The NCI accounts for most of the funding for research in the U.S. with a $5.665 billion budget for fiscal year 2018! To get some perspective, compare that to the American Cancer Society and the Susan B. Komen Foundation (two of the biggest cancer-focused charities in the U.S.), which bring in around $800 million and $240 million, respectively, each year. But that doesn’t mean individual philanthropists can’t make a difference. On the contrary, while having a large, government-focused, nationally coordinated funding engine behind cancer research can drive innovation, many of the grant recipients from the NCI have many hoops to jump through and restrictions to follow. That makes even small grants — known as “discretionary funds” — so valuable. Researchers and scientists are looking for bold new ideas to sheperd through the early stages of development in order to get that next phase of funding. Philanthropic dollars could be the catalyst for many breakthroughs, as long as the giving is strategic. Kent advises to cut out the intermediary organizations, look at the list of hospitals and research centers the NCI targets, and make sure that young innovators have the resources they need to succeed. Which Types of Cancer Get the Most Funding? To get the fuller picture of the field, we’ll need to break down how each type of cancer is treated when it comes to major donor money — and where the gaps remain.Total amount of funding per year (per latest NCI data): $520 million In 2017, there were an estimated 252,000 invasive cases of breast cancer diagnosed in the U.S., and globally it is the most common form of cancer in women. While death rates from the disease have steadily declined since 1989, there are still some major gaps in access to the most effective treatments, falling along racial lines. A recent American Cancer Society survey shows that black women were 39 more likely to die from breast cancer than white women, partly due to the inequities in their representation through clinical trials and a lack of preventative information outreach in communities of color. That’s why targeted breast cancer treatments require diverse research data. We need to do better at making sure all women have a chance at beating the disease. IMPACT OPPORTUNITY: BRINGING EQUITY TO EARLY DETECTION What solutions are working? A biostatician at Fred Hutchinson Cancer Research Center is developing a scalable, automated approach for detecting breast cancer recurrence, which should hopefully be available to women in all income brackets. Globally, we are finding ways to get treatment and better diagnostic tools to underserved communities, especially in sub-Saharan Africa. Organizations to know: Fred Hutch and the Dana-Farber Cancer Institute are both research hospitals (in Seattle and Boston, respectively), with robust teams working on breast cancer breakthroughs. The National Breast Cancer Foundation helps women affected by the disease through programs such as free mammograms. And the similarly-titled Breast Cancer Research Foundation stands out for its high impact work, supporting 275 scientists across 15 countries.Total amount of funding per year (per latest NCI data): $283 million Lung cancer is the deadliest form of the disease in the U.S., with an estimated 160,000 lives lost each year, accounting for nearly 25 percent of all cancer-related deaths (400,000 thousand are currently living with the disease, and an additional 200,000 will be diagnose this year). It’s aggressive and unrelenting, with only 17 percent of patients surviving beyond five years of their diagnosis — and that percentage drops by 10 for the rarer form of small cell lung cancer (SCLC). There’s also an unfair stigma attached: Most people still believe that all those who contract the disease are smokers or lead unhealthy lives, even though 25 percent of those who contract lung cancer have never smoked. Unfortunately, the misperceptions lead to delayed diagnoses and even funding biases. This, combined with the challenges of early detection and effective treatments — for SCLC especially — make it more urgent than ever that we find a way to make an impact as funders. IMPACT OPPORTUNITY: GET BETTER DATA What solutions are working? Immunotherapy treatments have shown promise in non-small cell lung cancer cases, new biomarkers have given doctors more targeted intervention options and cutting edge surgery techniques like “microcoil localization,” in which smaller nodules can be removed, are becoming more common. For patients with SCLC, there are fewer new treatment options and a lack of understanding about the basic biology. That’s where impact philanthropy comes in. Federal funding is scarce for SCLC research, so strategic investments — specifically when it comes to data collection and increasing access to biospecimens, which are difficult to come by — can make a world of difference. Organizations to know. The Milken Institute’s Giving Smarter Guide for SCLC is a great place to start your research. Among the high impact organizations the report identifies are: The American Lung Association (closing funding gaps across all levels of research), Free to Breathe (supporting increased clinical trials participation) and the Bonnie J. Addario Lung Cancer Foundation (promoting scientific collaboration in the field of treatment science and supporting young researchers with bold, high-risk ideas).Total amount of funding per year (per latest NCI data): $241 million Here’s some good news: Currently, the 10-year survival rate for men diagnosed with prostate cancer is 91 percent. However, the disease is the still the second-leading cause of cancer death among men (after lung cancer), with 30,000 fatalities per year and about 164,000 new cases diagnosed. Just as Breast Cancer Awareness Month in October receives a huge marketing push (with sponsors like the NFL spreading the pink brand), Step Up For Blue in September for prostate cancer has also been a successful campaign. But major challenges remain, as there has been recent debate over whether a prostate-specific antigen test (PSA) test is accurate enough and whether it will lead men to get procedures they don’t need. IMPACT OPPORTUNITY: FUND BOLDER IDEAS IN PREVENTION AND DETECTION What solutions are working? Researchers are hard at work trying to come up with better screenings for early prostate cancer detection, including the use of biomarkers and liquid biopsies. For those who have already been diagnosed with the disease, there is now a focus on targeting aggressive forms of recurrence through the androgen receptor (a molecular source that drives tumor growth). And in terms of prevention, one recent study has found that the steroid finasteride — often used to prevent hair loss in men — may reduce prostate cancer risk for a period of up to 16 years. Organizations to know. In addition to the research centers already mentioned, the Prostate Cancer Foundation has developed a unique funding strategy for the field that has been likened to venture philanthropy: It gives awards for creativity and innovation. And ZERO aims to find an end to the disease once and for all, funding innovative early detection methods and gene activation treatments.Total amount of funding per year (per latest NCI data): $241 million Often grouped in with lymphoma and myeloma, blood cancers claim the lives of approximately 58,000 people each year, and about 175,000 new cases are expected to be diagnosed in 2018. On the positive side, the five-year survival rate for leukemia has more than quadrupled since 1960. Research has accelerated over the decades, especially since the disease affects the most vulnerable populations: most commonly people over the age of 60, as well as children and teens. Scientists are still trying to uncover risk factors associated with leukemia, and philanthropic funding can help bolster efforts. IMPACT OPPORTUNITY: OUT WITH THE OLD, IN WITH THE NEW What solutions are working? Moving away from so-called “trickle-down therapeutics” — in which drugs that help older patients are assumed to be useful among younger ones — has improved treatment options. And researchers at Fred Hutch have identified more precise patient-to-medicine matching that has revived drugs once thought to be ineffective. Indeed, Seattle has become the center of childhood leukemia research, with repositories of frozen tissue samples expanding the knowledge base for scientists. Organizations to know. Focusing on the major research hospitals — such as Fred Hutch, Dana-Farber or Sloan-Kettering Memorial Hospital in New York — is a way to ensure dollars are being spent wisely, while St. Jude’s Hospital (focusing on childhood cancer care), the Leukemia and Lymphoma Society (dedicated to fighting blood cancers of all types) and Best Match (which helps give information to patients and potential bone marrow donors) are worth investigating.Total amount of funding per year (per latest NCI data): $212 million Among both men and women, colorectal cancer is the second-leading cause of cancer deaths in the U.S., killing 50,000 people per year, with more than 130,000 new diagnoses (it also is projected to cost the U.S. healthcare system $20 billion in direct medical expenses by the year 2020). The good news is that rates of incident and mortality have all gone down in recent decades, thanks to improved diagnostic tools, of which colonoscopies are a vital part. Early screenings and healthy diets are effective prevention methods, as is changing misconceptions. But more than anything else, philanthropic dollars can truly help save lives. IMPACT OPPORTUNITY: MORE SUPPORT TO TARGETED RESEARCH What solutions are working? In this regard, Faster Cures (A Center of the Milken Institute) reported on how private funding has helped close the gap when it comes to clinical research on colorectal cancer interventions. The two main areas of progress in this impact philanthropy effort have been 1) boosting studies that have found molecular pathways driving tumor resistance; and 2) evaluating the use of immunotherapy strategies in combination with other treatments. Organizations to know. Once again, Milken’s Giving Smarter Guide is the best starting point, but as the report points out, there are only a handful of organizations that give direct support to research on colorectal cancer. Among those orgs, Colon Cancer Alliance (advancing biomarker research), Fight Colorectal Cancer (funding late-stage research, bridging the gap between patients and scientists) and Chris4Life Colon Cancer Foundation (funding cutting edge cancer research) stand out. Where is More Cancer Research Needed? The above-mentioned diseases all receive federal funding above the $200 million range, and the investments align with each cancer’s commonality. But that doesn’t mean there aren’t disparities that need to be addressed. At $142.9 million, melanoma receives around half the funding that breast cancer receives (per NCI data) and yet it’s the most common form of cancer in the U.S. It’s also the leading cause of cancer death in women ages 25-30 and kills about 10,000 people total each year (you can support the Melanoma Research Foundation to spread much-needed awareness). IMPACT OPPORTUNITY: SEEK OUT DISEASES WITH DIFFICULT DIAGNOSTICS Pancreatic cancer ($152 million of research investment) has the highest mortality rate — 74 percent of patients die within the first year after diagnosis — which hasn’t changed much over the course of the past four decades. And the rates of occurrence may be higher than we think. One major problem in this area is the lack of strong diagnostics to catch the disease in its early stages (when it still may be treatable). Advances in genetic testing and even a breath analysis that could identify people at risk would fall under the category of bold ideas that need more dollars to advance past the clinical/trial stages of research. A similar problem occurs with ovarian cancer ($95 million of NCI funding), one of the deadliest forms of cancer among women (it affects about 22,000 women each year, and kills more than half of those diagnosed). Promising early intervention methods are still in their nascent stages. If you’re really looking to make an impact on an overlooked form of cancer, know that more than half a million people in the U.S. are living with bladder cancer, but federal funding accounts for less than one percent of care costs and even the private sector has neglected it: Only three NGOs give more than $500,000 research grants per year. The Milken Institute has a Giving Smarter Guide, which you can use as a reference to help close this gap and fix the ineffective trial infrastructure that is hampering advancements in this field. Beyond Cancer Research: Should Funders Support Quality of Life Initiatives? In short: Absolutely. What shouldn’t be lost among all the statistics and data points is the enormous human toll that cancer takes. Millions of people — young and old, of every race and background — are living with the burden of the disease day in and day out, going to treatments and countless doctor appointments, enduring the heavy mental trauma, dealing with hefty medical bills, leaning on friends and family, and trying to keep the fires of hope burning. And they need our support. THREE IMPACT OPPORTUNITIES Sponsor grassroots organizations. When it comes to palliative or holistic care, it’s often best to think small. Research the groups that are bringing a personal touch to cancer patient outreach, since they will often have the most impact. Listen to survivors. Even the biggest influencers know how important it is to get feedback from those living with cancer. Fred Hutch makes sure to send out questionnaires to patients who have received treatment through the hospital and use the answers as a teaching tool. In this way, researchers can learn about long-term side effects of certain interventions, the extent of emotional stress, and even how financial hardships play a role in recovery. Donors should learn from this model, making sure that people are always front and center in cancer funding. Show compassion. Research shows that the simple act of kindness can make an enormous difference in the quality of cancer care and outcomes for patients, leading to faster healing times and reduced pain. This piece (via The Conversation) details six specific types of emotional support that have the most impact: Deep listening, empathy, generous acts, timely care, gentle honesty and support for family caregivers. What Can We Do About Childhood Cancer? When we talk about empathy in cancer care, this area certainly stands out above the rest. One in 285 kids in the U.S. will be diagnosed with cancer before they turn 20, and more than 250,000 new cases are diagnosed worldwide each year. While the overall survival rate for childhood cancers has thankfully increased from 10 percent to nearly 90 percent over the past 40 years, rarer forms of the disease have much lower numbers. There’s also a severe gap in funding: Only about four percent of the annual NCI budget goes toward childhood cancer research. IMPACT OPPORTUNITY: CONSIDER THE ENTIRE HEALING JOURNEY Perhaps the biggest dollar-to-dollar impact donors can have is funding research into the long-term health effects of childhood cancers, which is still not fully understood (one report shows that 80 percent of adult childhood cancer survivors report chronic health conditions). Seattle Children’s Research Institute and the Pediatric Cancer Research Foundation are good places to start. But as mentioned above, we cannot forget about quality of life initiatives, especially since the trauma of having an illness like cancer can last for decades. In this regard, the well-known Make-a-Wish Foundation has demonstrated the power of personal touches in cancer care (it’s still worth researching individual chapters to see how each one is managed, as there are differences in spending efficacy). Regional Ronald McDonald Houses and the aforementioned St. Jude’s all offer support for families. Is Immunotherapy the Future of Cancer Treatment? According to president and director of Fred Hutch, Dr. Gary Gilliland, “Immunotherapies represent one of the most exciting advances in cancer therapy — ever.” The basic concept of this form of treatment is to genetically engineer a patient’s own immune cells to attack cancer cells, which not only avoids invasive procedures and treatments that have harmful side effects, but could also prove more effective in killing tumors — even the most dangerous kinds. Last August the U.S. Food and Drug Administration approved the use of CAR T-cell therapy in adults and children with advanced leukemias. And researchers are just getting started. IMPACT OPPORTUNITY: FUND INCUBATOR PROGRAMS THAT DELIVER Once again, philanthropy can help fill the gaps in funding when it comes to cutting edge medical treatments such as immunotherapy. For example, the Anna-Maria Kellen Clinical Accelerator — a venture philanthropy and drug incubator program backed by the Cancer Research Institute — recently acquired a robust amount of data from clinical trials with different immunotherapy combinations to see which ones were most effective, tapping into a global network of experts. And the Concern Foundation focuses funding to new investigators, primarily in the areas of immunology and the genetics of cancer, to bridge resource gaps. What Obstacles to Cancer Care Can Philanthropy Solve? We’ve discussed the gaps in funding across many different cancer fields, but it’s also worth taking an overview of the scientific landscape to see exactly what challenges remain and how donor dollars can break down such barriers. THE PROBLEM: Even though many cancer deaths happen when the disease is metastatic, anti-metastatic drugs aren’t pursued that much because of the length and cost of clinical trials. IMPACT OPPORTUNITY: Fund scientists who are seeking to find more targeted interventions for metastatic tumors, and have the patience to see such research through. THE PROBLEM: The current medical insurance system in the U.S. makes preventative measures — such as the HPV vaccine, which has been shown promise in relation to cervical cancer — financially prohibitive. IMPACT OPPORTUNITY: Work with policymakers to refine such innovations through private-public partnerships, and expand the resources for medical professionals in communities that don’t have access to early detection technology (such as imaging software that can spot melanoma at an early stage). THE PROBLEM: Many models for new cancer treatments and interventions are inadequate, tested mainly with certain animal models, without much human data to go on. IMPACT OPPORTUNITY: Look to CRISPR. Capturing the genetic complexity of cancer cells is complicated and costly, but new tech may help. While we’ve covered the importance of closing funding gaps for rare cancers that don’t have enough human tissue samples to advance knowledge, CRISPR (which is a way of editing genomes) may help scientists develop more models at a cheaper and faster pace. Another bold idea that philanthropists can boost. As you can assess from everything discussed above, cancer is a monster of an issue. The progress we’ve made over the years in research, treatment and care has been slow — but it has been progress. Those who live with the disease — or have close friends and family who do — are on the frontlines, fighting bravely. We owe it to them to seize the moment, recognize the places where we can do the most good and forge a path to brighter future. Related Reading As referenced earlier, How to Find an Impactful Cancer Charity can help guide your giving journey. Fred Hutch wrote this original Giving Compass post about why 2018 will be an exciting time to invest in cancer research, with great details on immunotherapy innovations. The Bonnie J. Addario Lung Cancer Foundation profiled three inspiring women with a rare form of lung cancer who mobilized grassroots awareness for their condition. The Wellesley Institute explores the connection between race and breast cancer screenings. Time magazine reported on how rapid autopsies are helping in the fight against cancer.
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