(Next Avenue invited our 2017 Influencers in Aging to blog about the one thing they would like to change about aging in America. One of the posts is below; we will be publishing others regularly.)
From customized Coca Cola bottles to 3-D body scan-tailored blue jeans, we have entered an unprecedented age of personalization — the market for personalized gifts alone is expected to exceed $31 billion by 2021.
In health care, precision medicine (the relatively recent practice of determining disease treatments based on an individual’s specific genetics), has already yielded important benefits in fighting certain cancers. And continued research holds promise for a host of other conditions. But treatments are just the tip of the iceberg.
When it comes to healthy aging we too often receive one-size-fits-all advice that ignores the potential personalization can have in preventing the onset of many maladies associated with growing older — including cancer, heart disease, diabetes and Alzheimer’s disease.
Precision Prevention
Leveraging the phenomenal advances made in genomics research and in the analysis of large health data sets for what I call “personalized aging” is the needed next step in efforts to extend life and health spans. Our goal now is to sift through tens of millions of genetic variants and identify those that determine both susceptibilities to diseases as well as responsiveness to diets, exercise, supplements, preventive therapies and more.
This information can be used to recommend optimal interventions on an individual basis. For example, recent precision-related research on aspirin, a longstanding medicine-cabinet mainstay, is shedding light on which people should take aspirin for colorectal cancer prevention versus the minority of folks who might not be helped, or could even harmed instead.
Differentiated Diets
The emerging discipline of nutrigenomics is the study of how our diet interacts with our genes. Coupled with wearable technologies that monitor and encourage exercise, it has particular promise for empowering people to promote their own longevity, health and wellness in a customized and focused way.
Scientists, including several here at the USC Leonard Davis School of Gerontology, are discovering that the benefits of dietary variations — from high-protein to veganism to periodic fasting to Mediterranean and everything in between — appear to vary based on multiple specific genetic variants (called SNPs).
Wouldn’t you like to know the best recipe for improving your own health and whether there are foods you should avoid? Soon, we can expect actionable answers.
A Call for Change
USC scientists and engineers recently found that women exposed to certain amounts of air pollution are more at risk for global cognitive decline and more likely to develop dementia.
These adverse effects were more pronounced in women who carry a variant of the APOE gene called APOE4, a genetic variation that increases the risk for Alzheimer’s. That finding can now be considered when making individual, planning and policy decisions.
Marketers recognize that personalization sells, even dubbing the trend ego-nomics. The time is ripe, too, for precision prevention, a new strategy that leverages DNA and other biomarkers, along with individualized diet and lifestyle advice.
The result we hope for: A customized prevention plan to enhance each person’s ability to healthfully age to his or her full potential.
Now that’s a gift worth giving.


Why We Need a Personalized Prescription for Wellness

Pinchas Cohen, M.D.

President Barack Obama announced a new “precision medicine” initiative in his State of the Union address this week that could give a boost to this exciting new health field.
“I want the country that eliminated polio and mapped the human genome to lead a new era of medicine: one that delivers the right treatment at the right time,” Obama said. His initiative, Obama added would "bring us closer to curing diseases like cancer and diabetes and to give all of us access to the personalized information we need to keep ourselves and our families healthier.”
But what exactly is “precision medicine?” And how might it affect Americans over 50?
Harnessing Health Data
The Cystic Fibrosis Foundation describes precision medicine as “treatments targeted toward a precise defect in the primary cause of a disease.” More precisely, precision medicine takes advantage of the vast amount of health data being collected worldwide, including genetic information. Researchers work to identify patterns to develop better treatments for individual patients, according to the University of California San Francisco (UCSF), which has helped develop the field.
(MORE: What to Know About Health By 50, 60, 70)
An Important Breakthrough
The approach has reversed cystic fibrosis in some patients, Obama said.
One of those is William Elder Jr., a 27-year-old medical student who was not expected to live long when he was diagnosed as a child with the disease. Elder attended the State of the Union as a guest of Michelle Obama and the White House called his story “a testament to the promise of precision medicine.” He was treated with a medication that targeted the underlying cause of his disease, and is now doing well.
(MORE: The Pros and Cons of Genetic Testing)
‘Within Our Grasp’
Although the president wasn't specific with details about how much money would be allocated in his precision medicine initiative or who'd get it — those specifics are due in coming weeks — leaders in medicine across the country praised his announcement.
“Incredible advances have already been made in cardiovascular research and I hope initiatives like this will lead to even more important discoveries, treatments and cures that can be directed to patients more quickly,” said Dr. Patrick T. O’Gara, president of the American College of Cardiology, in a statement. “The promise of precision medicine is within our grasp.”
(MORE: How Science Can Help Cure Age-Related Diseases)
Since heart disease risk increases with age, as plaque gradually clogs arteries, advancements in this area would be a great benefit to boomers.
 
Hope for Cancer, Other Research
Precision medicine research by the National Institutes of Health has focused on cancer patients, including those with lung cancer., the second most common cancer among men and women (not including skin cancer).
Like many diseases, the risk of getting lung cancer increases with age. Two out of every three people diagnosed with lung cancer are 65 or older.
UCSF Chancellor Sam Hawgood also praised Obama’s initiative, calling it “a major step in the right direction for medicine, drug development and health worldwide.” UCSF’s Institute for Human Genetics has tackled research into heart disease, diabetes, cancer and age-related diseases such as Alzheimer’s, the university said.


Obama's Precision Medicine Initiative and You

Emily Gurnon

There’s never been a better time in the history of modern medicine to get cancer treatment, thanks to a bevy of novel therapies grouped under the name “precision medicine” or “personalized medicine.” These methods exploit the unique genetic fingerprint of each individual cancer to create a more precise and effective treatment.
The cornerstone of precision medicine is “targeted therapy,” which means using drugs that target specific molecules inside a cancer cell, particularly those that control cell growth.
The Road to Better Cancer Treatment
To understand how far these targeted therapies have brought us, it's important to know how we've been diagnosing and treating cancer for the last several decades. Here's a basic explanation:
A suspected cancer — a lump in the breast, a nodule in the prostate or abnormal white blood cells on a lab test — needs to be confirmed with further testing. Typically, this means removing a piece of the abnormal tissue (a biopsy) and sending it to a pathologist, who examines it under a microscope to see if it looks cancerous.
With a modern pathology report of a specific cancer, we don't just have a mug shot, we have the killer's DNA.
Once a specimen is determined to be cancerous, the pathologist tries to determine which organ the cancer started in. That information is important because lung cancer that spreads to the brain still looks and behaves like lung cancer, not brain cancer. Breast cancer that ends up in the bones still behaves like breast cancer, not bone cancer.
With the diagnosis of cancer and the “organ of origin” confirmed, the next step is to “stage” the cancer — that is, to figure out how advanced it is.
For example, colon cancer in its earliest stage is just a clump of cells on the end of a polyp. But if the cancer has grown down the stalk of the polyp and into the wall of the colon or spread even further into the lymph nodes of the colon or made it all the way into the liver, then the cancer is in increasingly advanced stages.
Generally speaking, the more advanced a cancer is, the more difficult it is to cure. And nearly every cancer that has spread beyond the organ of origin to another organ (called metastatic or metastasized) is nearly impossible to cure; Hodgkin’s lymphoma and testicular cancer are the exceptions.
This staging process typically includes computerized tomography (CT) scans or positron emission tomography (PET) scans to look for enlarged lymph nodes or evidence of distant spread.
Unfortunately, these scans cannot see on the microscopic level. And because cancer is a microscopic disease, many patients who are thought to have localized cancer at the time of diagnosis, actually have metastatic disease. Precision medicine is addressing this problem.
Macroscopic Approach to a Microscopic Disease
With the diagnosis and staging done, treatment can begin. Commonly, some combination of surgery, chemotherapy or radiation is used to treat all of the cancer identified during staging.
Some patients are cured with this approach, but unfortunately, and far too often, the tumor recurs months or years later — even in cases where we thought “we got it all.”
More chemotherapy can knock the cancer back, sometimes to the point of invisibility, but it doesn't always kill all of the cancer cells, and months or years later it can come back again. Then, this next “recurrence” is treated with another round of chemotherapy. Sometimes, the cancer returns, quicker than the last time and even more resistant to chemotherapy.
This is where we’ve been: an admittedly imprecise, macroscopic approach to a microscopic disease, using treatment that, despite increasing refinements, remains harsh and often punishing to the body of the patient.
Chemotherapy is a form of carpet bombing, a poisoning meant to kill more cancer cells than healthy cells. But the collateral damage — the side effects of chemotherapy — can be quite a price to pay.
Enter Cancer Genomics
Cancer genomics is the science of analyzing the genetic makeup of a cancerous cell to better understand its true malignant potential. Cancer genomics have altered the field of oncology in substantial ways.
Spurred on by the Cancer Genome Atlas project, which has sequenced the DNA of 11,000 tumors from 33 of the most prevalent cancers, we now have a much more sophisticated way of staging a cancer.
A modern pathology report includes an ever-increasing litany of proteins and genetic markers that tell us far more than a CT scan or simple biopsy about what this particular tumor is capable of doing. We don’t just have a mug shot, we have the killer’s DNA.
In his Pulitzer-prize winning book The Emperor of All Maladies: A Biography of Cancer, oncologist Dr. Siddhartha Mukherjee lays out the rationale for precision medicine/targeted therapy: “A hundred instances of Hodgkin’s disease, even though pathologically classified as the same entity, were a hundred variants around a common theme... Cancers possessed temperaments, personalities — behaviors. And biological heterogeneity demanded therapeutic heterogeneity; the same treatment could not be applied to all.”
Though a stronger pair of binoculars might give you a better look at the bear that is charging you, if all you have is the same old slingshot, the outcome of the encounter won’t change — except that you have more time to anticipate your demise.
A Revolution in Cancer Treatment
But cancer genomics are leading a revolution in cancer therapy, and in particular, in targeted therapies.
The most basic explanation for the complex process of cancer is that a genetic mutation either flips a cell’s "start growth" switch permanently into the “on” position; or it flips the "stop growth" switch into the “off” position. Both scenarios lead to unlimited growth.
The “carpet bombing” chemotherapy of old is rapidly being replaced by new "sniper" drug targeted therapies that enter the cancer cell and restore normal cellular growth. Since these drugs single out cells with genetic mutations, healthy cells are generally unaffected.
The first and perhaps most famous of these targeted therapies is a drug called imatinib (its trade name is Gleevec). Its primary use is in the treatment of chronic myelogenous leukemia (CML), a cancer of the white blood cells. Imatinib works by turning off the BCR-ABL gene, which is the mutated gene that causes most cases of CML.
For many patients with CML, imatinib can transform what was an almost uniformly fatal disease into a chronic illness. Recent trial data show that more than 80% of patients with CML treated with imatinib will survive more than 10 years. Just like with diabetes or hypertension, if you take your medication, you can keep it in check.
The discovery and success of imatinib has ushered in an explosion of second- and third-generation targeted therapies aimed at other cancerous gene mutations. It remains unclear if all of these targeted therapies will ever be able to offer a true cure. But either way, this is the news that so many have been anxiously awaiting.
It has been 47 years since President Nixon signed the National Cancer Act of 1971, commonly referred to as the opening salvo of the “War on Cancer.” Finally, it seems like the tide may be turning.


How Precision Medicine Is Changing Cancer Treatment

Dr. Craig Bowron

(This article appeared previously on STATNews.com.)
Sponsors of The 21st Century Cures Act call it a win-win: a fusion of funds for medical research with new rules that direct the Food and Drug Administration (FDA) to approve drugs and devices with greater urgency. There’s also money to help states fight the opioid epidemic, and a boost for mental health care.
But this is Washington, so even this bipartisan bill, which the House of Representatives approved in a landslide and the Senate passed Wednesday, leaves a trail of winners and losers. (Update: President Obama signed the bill into law on Tuesday, Dec. 13.)
Winner: Drug Companies
More than 1,300 lobbyists roamed the halls of Congress on the Cures Act, and disclosure reports show most of them were working for pharmaceutical companies.
Their work has paid off.
Among other measures, the legislation calls for the use of “data summaries” to support the approval of certain drugs for new indications, rather than full clinical trial data. The Cures Act will also allow drug companies to promote off-label uses to insurance companies, allowing them to expand their markets.
They did not get everything they asked for, however. Among the provisions that the Democrats beat back was longer market exclusivity for certain drugs.
Winner: Medical Device Manufacturers
According to the Advanced Medical Technology Association, which represents 300 medical device companies, the Cures Act builds on FDA’s current programs to allow a quicker path for breakthrough medical technologies for patients with life-threatening or irreversibly debilitating diseases or conditions and limited alternatives.
“Passage of this important legislation is a milestone in improving the innovation ecosystem for medical technology and ensuring the availability of new lifesaving, life-enhancing devices and diagnostics for patients,” said the group’s president, Scott Whitaker.
Critics of the measure, such as Public Citizen’s Health Research Group, say the designation of “breakthrough” devices is too broad, and could lead to clearance of devices that aren’t ready for the market.
Winner: National Institutes of Health (NIH)
An earlier House version of the legislation called for the NIH to get an $8.75 billion boost in its budget. The final legislation includes just more than half that amount for the agency: $4.8 billion. But with an incoming president who has called the nation’s medical research agency “terrible,” it could have been worse.
The landmark legislation provides funding for three signature Obama administration research programs over the next 10 years: the “moonshot” against cancer, the BRAIN Initiative, and the Precision Medicine Initiative.
Loser: The FDA
The $500 million designated for the FDA is meant to pay for the agency’s new responsibilities under The Cures Act. There is virtually nothing in it to improve some of FDA’s longtime problems.
The Government Accountability Office considers two of the FDA’s areas of focus especially “high-risk:” food safety and post-approval oversight of medical products that went through the fast track.
There’s also no money in The Cures Act for aging, deteriorating labs, outside of headquarters, which Commissioner Dr. Robert Califf has said pose a serious problem.
Winner: ‘Real World Evidence’
The Cures Act directs the FDA to evaluate the use of “real world evidence” for approval of new indications for FDA-approved drugs. Proponents see this as a way to apply useful and timely information learned from observational studies, patient input, anecdotal data and other research to drug and device approval.
Loser: Randomized Clinical Trials
Currently the gold standard for testing drugs and devices for safety, the adoption of real world evidence standards may indicate that randomized clinical trials will become less important for drug and device approval.
Winner: Michael Milken’s FasterCures and a Host of Patient Advocacy Groups
Michael Milken, the former junk-bond king turned philanthropist, has hosted retreats and receptions from Lake Tahoe, Nev., to New York, putting lawmakers in front of renowned scientists, patient advocates, Cabinet secretaries and biomedical industry chief executives — all with the objective of winning support for medical innovation.
His Milken Institute center, FasterCures, was integral to developing support for the Cures bill. Other groups, including the American Cancer Society Action Network and Research!America, all supported The Cures Act — although some expressed disappointment with the reduced funding.
Losers: Consumer Advocacy Groups
Public Citizen’s Health Research Group and the National Center for Health Research campaigned hard against The Cures Act. Although they were able to make some changes, both organizations believe The Cures Act, as it stands, will endanger public health by weakening FDA standards.
Loser: Regenerative Medicine
Sen. Mark Kirk of Illinois, who had a stroke in 2012, introduced the REGROW Act earlier this year to expand treatments for stroke victims and people suffering from Alzheimer’s, Parkinson’s and diabetes. Kirk’s legislation, which GOP leaders tried to include in The Cures Act, would have permitted the FDA to approve stem cell treatments conditionally, without a large, final-stage clinical trial that is usually required.
But many researchers argued that stem cell therapies are still in the early stages of safety and efficacy, and urged Congress to hold off giving FDA such a mandate.
The final Cures draft does not allow new regenerative medicine products, which include stem cell therapies, to skip the Phase 3 trials. But it does permit FDA to grant them accelerated approval if they can show that surrogate endpoints might indicate the drug works, subject to further study.
Winners: Reps. Fred Upton (R-Mich.), Diana DeGette (D-Colo.) and Tim Murphy (R-Pa.)
For Upton, who must step down in January as chairman of the House Energy and Commerce Committee, passage of The Cures Act has been a near obsession. For more than three years, Upton, along with DeGette, has herded patient advocacy groups, the drug and device industry and even rock star Roger Daltrey to support his cause. The payoff: a 392-to-26 vote.
Upton also got a bonus: More than $1.3 million in donations from health care political action committees during the time he was crafting the bill.
Murphy, a psychologist, is an unexpected victor. Merely days before the vote, the House leadership attached his mental health legislation to the Cures package.
Dr. Maria A. Oquendo, president of the American Psychiatric Association, praised the mental health provisions in The Cures Act, and said the law will greatly benefit patients. The legislation includes money to create suicide-prevention programs and to improve mental health services for children. It also allocated the $1 billion in state grants for the opioid epidemic, and seeks to strengthen laws that require the government and insurers to treat mental illness like other diseases.
“Congress has finally come together in a bipartisan effort to bring serious mental illness out of the shadows,” Murphy said. “It is my pledge to the patients and families in crisis that I will never stop fighting to deliver treatment before tragedy for those most in need.”
Winner: Sen. Lamar Alexander (R-Tenn.), chairman of the Committee on Health, Education, Labor, and Pensions
Since July 2015, when the House passed a draft of The Cures Act and sent it to Alexander’s committee, the Tennessee lawmaker has had to overcome enormous opposition from Democrats and Republicans.
His GOP colleagues vowed to reject any legislation that cost money — no matter how noble its goal — unless the cash was cut from another program.
The Democrats did not view The Cures Act’s main purpose — “acceleration” of FDA’s work — as especially noble. Most of them believe the agency already works fast enough, perhaps too fast, and needs to maintain its status as the global regulatory leader in patient protection.
So Alexander devised a plan: He chopped The Cures Act into small “medical innovation” bills, which had committee consensus. These ranged from measures to help NIH hire and retain scientists to developing better ways of managing electronic health records. Then, he took the hard stuff to the Senate and House leadership, who crafted the current compromise.
Loser: Sen. Elizabeth Warren (D-Mass.)
Warren took to the Senate floor last week to rail against The Cures Act, saying it had been “hijacked” by the pharmaceutical industry. She said the legislation watered down safety requirements for new drugs and devices and then, as a trade-off, called for research funding — at levels that must be appropriated on an annual basis
“I cannot vote for this bill,’’ Warren said to a largely empty chamber. “I will fight it because I know the difference between compromise and extortion.”
Warren returned the next day with reinforcements: Sen. Dick Durbin of Illinois, and Sen. Jeff Merkley of Oregon, who agreed that the Cures Bill should be stopped. But she could not get majority support, even in her own party.
Winner: Vice President Joe Biden
Since the death of his son, Beau Biden, from brain cancer, the Vice President has devoted himself to a cancer “moonshot,” designed to speed cures by compressing 10 years of medical research into five.
The initiative faced an uncertain future under the new administration, but The Cures Act saves it by authorizing $1.8 billion over five years to continue the program.
Congressional leaders praised Biden for his work on the bill, which the White House supports.


The 21st Century Cures Act: Who Wins, Who Loses

Sheila Kaplan

The Food and Drug Association announced on August 16, 2022 that later this fall, Americans with mild-to-moderate hearing loss will be able to buy hearing aids without a prescription. The move by the FDA is expected to lower the cost of hearing aids.As the population ages, the number of people with disabilities will rise, meaning more people will need access to therapies and support systems. That's already happening with hearing loss, which affects most people after a certain age — yet hearing aids remain out of reach for many.
Kenny (Keith) Seto, self-portrait (2021). This series features self-portraits by adults living with intellectual or developmental disabilities from the "What Makes Me Me" exhibition at Scottsdale Arts in Scottsdale, Ariz.If this easy fix for a common problem isn't widely available, what does that say about the outlook for more complex conditions, such as intellectual disabilities, that are more expensive and harder to address in older adults? 
Some say it will take a societal change, both in the U.S. and abroad.
"If there is a readily available treatment and you don't pursue it, it seems unfair."
"Mitigating the challenges posed by and for the global aging population will require broad, systemic change and deliberative action" in science, medicine, and policy, Victor Dzau, president of the National Academy of Medicine wrote in the foreward to the NAM's "roadmap" for a world in which people are living longer and want to maintain productive lives.
The report notes that societies were designed for a population living just half as long as people will be living by 2050. 
It's essential for governments, individuals and the private sector to ensure people stay healthy as long as possible, which will mean overcoming obstacles including ageism, disease and inequity, the report said.
Old age not only increases the likelihood of disabling conditions, but is also the time when more people are likely to depend on public health insurance, said Maya Sabatello, associate professor of medical science in Columbia University Department of Medicine's Center for Precision Medicine and Genomics. 
"If you can maintain private insurance, you're likely to have more access to the various services and devices that are helpful," she said.
Like hearing aids.
An Easy Solution That's Out of Reach
For those who need hearing aids, it helps to have a money cushion. Medicare doesn't cover them, and private insurance doesn't always take care of the total cost, which can be thousands of dollars. 
While the Food and Drug Administration is expected to approve over-the-counter hearing aids later this year, those will likely cost "a few hundred bucks," said Next Avenue's 2021 Influencer in Aging Justin Golub, an ear, nose, and throat doctor and Columbia University professor. The cost could keep them out of reach for much of the population.
But cost is only one reason hearing aids are not being as widely used as they could be, Golub said in an interview. "The barriers to treating hearing in older adults specifically are multifactorial," he said, noting that there's a general lack of awareness, even apathy, among older people, their families and their doctors.
 "Sometimes when a condition's too common, it becomes a detriment to treatment."
"Society has sort of accepted that hearing loss in older adults is inevitable and it's not a big enough problem to be worth treating," Golub said. "I think that's now starting to change" with a growing number of studies showing it leads to "worse problems," he said.
Golub was an author of a March paper that found a "glaring" discrepancy between treatment of mild to moderate hearing loss in older adults compared with children. 
Adults were treated at rates four to five times lower than children, although the effects of even mild hearing loss in older adults has been linked to cognitive decline, the study found. Evidence, the authors said, "no longer supports the assumption that mild [hearing loss] is innocuous in adults."
"We do a much better job of getting hearing aids on kids who need them than we do on adults who need them," Golub said. "That just seems profoundly wrong."
"We do have some treatments, but we do a terrible job of delivering them," Golub said. "If the goal is for people to receive and benefit from the care, that does not happen on a societal or public health level."
"We need to recognize that while everyone does get a hearing loss, we shouldn't just accept it as normal," Golub said. "Sometimes when a condition's too common, it becomes a detriment to treatment. We don't work on things that are normalized."
The Other Big 'Ism'
Ageism is a factor, according to Golub and others. "I think there's just a tendency to give up on older people and just not care quite as much because it's just the inevitable pathway of life that things sort of fall apart," Golub said. "To a degree, you have to accept things slowing down and not working, but if there is a readily available treatment and you don't pursue it, it seems unfair."
"For people with disabilities, the conditions become more complex and more complicated as they grow older because of a lack of access."
"We also need more awareness across medicine," said Golub. A primary care physician, "the quarterback for health care," is often in a position to bring up the issue, but that doesn't always happen, he said. Hearing loss "needs to become on the radar of all primary care physicians for patients over 60."
Barbara Kelley, executive director of the Hearing Loss Association of America, agreed. "There really is no such thing as small hearing loss," she said. "Hearing loss affects different people in different ways. It's insidious. It creeps in."
"We know that people wait about five years from the time they learn they have hearing loss until the time they do something about it," Kelley explained. "Our priority is driving people to action."
Physicians often dismiss patients' complaints about hearing loss as "part of aging," said Kelley, who noted a friend's doctor used the term "age-appropriate hearing loss."
Beyond Hearing Loss
Inaction on health issues in older people goes beyond hearing aids. "A lot of people with disabilities are on Medicare or Medicaid," which often don't cover expensive treatments for a range of conditions, Columbia's Sabatello said.
"The prevalence of disabilities is proportionally high among marginalized populations," she said. Add age to that mix and there's an even bigger portion of the population that can't access services or devices that could help them in their daily lives, Sabatello added. 
Take the link between diabetes and blindness. Diabetes can worsen vision problems, and "we know that certain populations are less likely to have access to treatments that can save their sight," Sabatello said. "For people with disabilities, the conditions become more complex and more complicated as they grow older because of a lack of access."
"We know there are biases against marginalized racial and ethnic communities, and also ageism," Sabatello said. "The more you add all those 'isms' — ableism, racism, ageism — the conversations that need to be taking place about what services are available changes and the ability to access those services reduces. A lot of these intersect."
Sabatello added, "Attitudes towards the elderly are kind of funny, because we're all going to get there, but we always somehow think it doesn't get to us. The same with disabilities: Most of us will have disabilities one day, if we don't already have them."
Marsha Russell, 80, has been deaf since she was 23. Though the Americans With Disabilities Act was passed more than 30 years ago, discrimination persists, she said in an interview conducted via text message. It took 23 years for her town to provide closed captioning for its meetings, and when it finally added them, "that corner of the auditorium was filled," she said.
Crashing Through the Safety Net
"Poverty creates its own disability," said Russell, a former board member of the Littleton, Massachusetts Council on Aging and the town's Commission for Disability. "All programs at our Council on Aging have more than doubled in cost to those who participate." 
While financial aid is available, people must ask for it, and that can be "dehumanizing," she said.
"I can only hope that we're going to create a system where health care is provided freely and equally to everyone," Sabatello said. Incremental, privately funded programs that benefit a small population are helping to create a "tiered" health care system, and don't provide options for everyone.
There's also a "lack of knowledge and understanding among medical administrators and health care providers about the needs of people with disabilities."
"If we're continuing to pretend we can just put a bandage on rather than provide more holistic solutions, it will not work, except for a very, very small minority who have the financial means for it," she said.
Health care systems are "already overworked and overburdened," Sabatello said, "but ideally, there will be social supports within health care institutions who can provide information about where services and medical devices can be obtained."
That's where societal change comes in. 
The National Academies' roadmap report notes that age is the greatest risk factor for developing chronic conditions. Delaying the onset of these conditions involves addressing "social determinants of health" — such as early childhood development — across the population, according to the report. 
Societies, it says, need to transform their health, education and social systems to meet the challenge of a growing population with disabilities.
"There is no perfect system that I am aware of, but when services are centralized and interdisciplinary teams of clinicians are involved in providing care, then the needs of individuals with disabilities are better addressed," said Sabatello. 
While funding may be a reason these patients don't always have access to the best care, there's also a "lack of knowledge and understanding among medical administrators and health care providers about the needs of people with disabilities," she said.
Moreover, "there are common biases about low quality of life and lack of competency of people with disabilities, especially those with complex conditions," Sabatello said. "So there is a need to address structural issues as well as personal interactions and approaches to providing care to this population." 
Take Matters Into Your Own Hands
Below are links to additional resources related to this story.
Assistive Technology | ACL Administration for Community LivingNational Adult Day Services Association (nadsa.org)Aging in Place: Growing Older at Home | National Institute on Aging (nih.gov)State Councils on Developmental Disabilities | ACL Administration for Community LivingHiring In-Home Help - Family Caregiver AllianceUSAgingChecklist for Online Adult Disability Application (ssa.gov)


Why We're Failing Older Adults with Disabilities

Nora Macaluso

(This article is the second in a weekly Next Avenue series, The Future of Aging: Realizing the Potential of Longevity published by the Milken Institute Center for the Future of Aging. It was originally titled: Personalized Aging. The first article in the series was A New Model for the Future of Aging.) 
Since the dawn of humanity, people have been seeking anti-aging remedies, and this field has continued to grow unchecked. Many billions of dollars have been spent on unproven and sometimes dangerous treatments as well as potentially useful but simplistic and broadly targeted, “one-size-fits-all” advice, often informed by limited data and anecdotal success stories.
In the last few decades, we have witnessed waves of contradictory dietary recommendations, such as low-fat, low-carb, caloric-restriction and low-protein, and seen popular supplements come and go (fish oil, vitamin C, vitamin E, vitamin D). The list goes on and on.
Seeking Guidance About Anti-Aging and Aging
When we seek guidance, the best offerings often come from people who understand what makes each of us unique and can relate their wisdom to our individual goals. Why should aging — and the recommendations for healthy longevity given to aging adults — be different?
Pinchas Cohen, dean, Davis School of Gerontology at USCTaking individual characteristics into account in supporting maximal longevity is a concept I’ve termed “personalized aging.” And, as we try to ensure that the additional years in our extended lifespans are spent in good health, this idea’s potential impact is enormous.
In recent years, phenomenal advances in genetic research, coupled with increased application of high-performance computing to the analysis of large data sets, have transported this idea of precisely tailored health recommendations from the realm of science fiction to a likely next step in the progression of the medical field.
Personalized, or Precision, Medicine
The science of genomics has undergone a massive increase in applicability and accessibility in a relatively short time. What started with the discovery of gene mutations tied to specific rare diseases is now enabling physicians to determine which treatments for common age-related illnesses — from diabetes to cancer — will be most effective based on the patient’s genome. This approach is often referred to as personalized, or precision, medicine.
Over the same period, the cost of genetic sequencing has shrunk from several million dollars per individual genome to a few hundred dollars.
Similarly, it is now possible to determine one’s genetic makeup from the comfort of home, sending a vial of saliva through the mail.
Recommending Preventive Interventions Individually
In this time of incredible opportunity, our goal is to gain support for, and conduct, large genome-wide association studies, develop even more powerful computing techniques and sift through millions of genetic variants to identify those that determine responsiveness to diets, exercise, supplements and more. This information can then be used to recommend optimal preventive interventions on an individual basis.
For instance, the emerging discipline of “nutrigenomics,” or the study of how dietary factors interact with our genes, is especially promising.
As scientists, including several here at the USC Leonard Davis School of Gerontology, uncover links between specific diets and resistance to aging’s maladies, we recognize that there isn’t one ideal diet for everybody. Instead, the benefits of dietary variations — from high-protein to veganism to periodic fasting to Mediterranean and everything in between — appear to vary based on genotype.
Providing personalized, genomics-based guidance could make a huge difference in our society’s perception of aging and the huge costs of age-related disease that we collectively bear.
Personalized aging strategies can identify which diseases one might be at high risk for and develop appropriate prevention methods. Someone whose genes put them at high risk for diabetes should probably adopt a low-carbohydrate diet, while a person at high risk for coronary disease will benefit from a Mediterranean diet. Similarly, an individual with a genetic predisposition to cancer may reduce their risk by eating a low-protein diet.
Advice About Alzheimer's
Perhaps the most compelling case for personalized aging advice can be made for people with a genetic susceptibility to Alzheimer’s disease, which can now be determined with precision. The risk can vary dramatically based on the variants of several genes, particularly one known as APOE. People with the alleles [different versions of a gene] of APOE4, indicating high Alzheimer’s risk, could initiate a customized diet and exercise program along with brain-training exercises, enabling themselves to remain cognitively sound and independent for a longer portion of their golden years.
Much like the precious advice from those who know us best, receiving personalized aging support informed by genetic and lifestyle factors could help us better understand ourselves and empower us to confidently take steps to improve our lives.


Personalized Aging: Extending Lifespans and Healthspans

(This article appeared previously on Kaiser Health News.)
References to the Affordable Care Act — sometimes called Obamacare or the ACA — have been a regular feature of the current presidential campaign season. For months, Republican candidates have pledged to repeal it, while Democrat Hillary Clinton wants to build on it and Democrat Bernie Sanders wants to replace it with a government-funded “Medicare for All” program.
But much of the policy discussion stops there. Yet the nation faces many important decisions about health care — most of which have little to do with the controversial federal health law. Here are five issues candidates should be discussing, but largely are not:
1. Out-of-Pocket Health Care Spending
Millions more people — roughly 20 million, at last count — now have health insurance, thanks to the new coverage options created by the ACA. But most people are also paying more of their own medical bills than ever before.  A recent Gallup survey found health costs to be the top financial problem faced by adults in the U.S., outpacing low wages and housing costs.
Employers who still provide coverage to the majority of those with insurance are also battling rising costs. They have been passing at least part of that along by raising workers’ share of costs — including premiums, deductibles and the portions of medical bills they must pay — far faster than wages have been rising.
Meanwhile, even in the most generous plans offered to those who buy their own coverage through the ACA’s marketplaces, the portion of health care costs borne by consumers has left many unable to afford care.
As insurers have shortened their lists of “in network” doctors and hospitals, another out-of-pocket spending problem is becoming more common: The “surprise medical bill.” Those are bills for services provided outside a patient’s insurance network that the patient did not know was out-of-network when he or she sought care.
Some of the candidates — notably Clinton and Sanders — have talked about the issue. But serious discussion about ways to ensure health care services remain broadly affordable have been overshadowed by the fight over the fate of the federal health law.
2. Drugs — More Than Prices
Rising drug prices at the pharmacy counter have also proved problematic for patients. Both Republican and Democratic candidates have discussed proposals to address the cost of prescription drugs. But there is more involved in this issue than the prices paid by patients.
Drugmakers point out their industry is a risky one, and the big rewards on breakthrough drugs offset the losses for those that never make it to the pharmacy. But at what point does the cost to society for a drug, like new treatments for hepatitis C that tally more than $80,000 for a course of treatment, become prohibitive?
Meanwhile, scientists are rapidly approaching the point of being able to develop specific drugs for specific individuals, a trend known as “personalized medicine” or “precision medicine.” Even if everyone could be screened so that they would only get the expensive drugs that will help them specifically, how could those costs be spread over society as a whole?
And how fast should promising drugs be brought to market? Some decry the lengthy testing required for Food and Drug Administration approval. They say people are dying who could potentially be helped. But others are equally concerned that putting a drug on the market too soon poses risks to the public.
3. Long-Term Care
Every day, another 10,000 baby boomers turn 65 and qualify for Medicare. An estimated 70 percent of people who reach that threshold will need some sort of long-term care.
It’s not cheap. The annual cost of these services can range from approximately $46,000 for a home health aide to $80,000 or more for a bed in a nursing home.
Yet Medicare, the health program for the elderly and some disabled, does not pay for most long-term care services. Medicare has both nursing home and home care benefits, but they are temporary and limited to those with specific medical needs. Most people who need long-term care don’t need special medical interventions, just help with “activities of daily living.”
By contrast, Medicaid, the joint state-federal health program for people with low incomes, paid just over half of the nation’s estimated $310 billion tab for long-term care in 2013, the most recent year for which this information is available. But you either have to be very poor, or spend nearly all of your savings, in order to qualify.
Private insurance for long-term care exists, but it is expensive, and remains uncommon — paying for just 8 percent of the 2013 bill. And private insurance for long-term care has been getting more difficult to purchase as insurers pull back from the products because of rising costs as people, especially women, live longer.
4. Medicare
Speaking of older Americans, Medicare, which provides health insurance to an estimated 55 million people — 46 million older than age 65 and another 9 million with disabilities, is also in a financial bind.
Medicare accounts for 14 percent of all federal spending, and that is expected to grow rapidly as those boomers reach their highest health-spending years. The program already accounts for one of every five dollars spent on health care in the U.S.
Interestingly, Medicare spending has slowed dramatically in recent years. That has prompted a lively debate among health policy experts: How much is the slowdown due to the deep recession that caused spending to fall in all sectors of the economy, and how much to other factors that could continue even with stronger economic growth?
The Obama administration contends that changing the way Medicare pays health care providers, which has begun in the ACA, has helped put the program on more sustainable footing.
Many Republicans, however, led by House Speaker Paul Ryan, R-Wis., want to effectively privatize Medicare — which would transfer the risk for cost increases from the government to private insurers.
But even smaller changes can kick up big political pushback from those who rely on Medicare for their livelihoods. A recent Obama administration proposal to change the way the program pays for expensive drugs administered in doctors’ offices or clinics has brought cries of complaint from both Democrats and Republicans.
5. Dental Care
In 2007, 12-year-old Deamonte Driver from Maryland, died from a tooth infection that spread to his brain. That cast a harsh spotlight on the difficulty low-income Americans — even those with insurance through the Medicaid program — have getting dental care.
Research has shown repeatedly that care for the mouth and teeth is inextricably linked to the rest of the body. Oral problems have been linked to conditions as diverse as heart disease, diabetes and Alzheimer’s disease.
Coverage for adults remains spotty, however. According to the Centers for Disease Control and Prevention, one in every three adults has untreated tooth decay. More than 100 million Americans do not have dental insurance, the government reports. And more than a third (38 percent) of adults aged 18-64 reported no dental visits in 2014.


5 Health Issues the Presidential Candidates Should Be Talking About

Julie Rovner

Many startups aim to use technology to improve the lives of people as they age, from app-enabled ride sharing services to online marketplaces that help people find and manage caregivers. But the startups that generated the most enthusiasm in a business plan competition at the Silicon Valley Boomer Venture Summit, an annual conference recently held in the San Francisco Bay Area, came from the biotech world and aimed to help people age healthier.
Top Winner Offers Better Surgical Stitching
BaroStitch, the competition’s prizewinner, offers a better way to stitch up arteries after surgery. Other companies showcased a nonsurgical method to decrease arthritis hand pain, ways to control high blood pressure and a plan rooted in hormone therapy and DNA swabs that promises to make you live longer and feel younger.
The growth and promise of these companies stems from a new breed of entrepreneur emerging from schools like Stanford University and the University of California, Berkeley, according to Jody Holtzman, a business consultant who now leads the market innovation group for AARP.
“These interdisciplinary programs have ridiculous science, combined with design, combined with an MBA, and they’re manufacturing young people who can build companies,” Holtzman said.
Consider BaroStitch, which won the $10,000 prize. Its founders emerged from Stanford’s Biodesign program, where they identified a problem: While many modern surgeries utilize patients’ endovascular systems, they wind up putting so many devices into people’s arteries that the interior walls calcify, leading to what co-founder Eric Kramer called a “bird’s nest” of sutures prone to infection.
With a more elegant method of closing up arteries, Kramer said, BaroStitch could reduce the length of hospital stays, saving health systems thousands of dollars per patient. With the number of those arterial procedures growing by 10 percent per year and passing 500,000 last year, Kramer said the market for BaroStitch’s solution is as much as $390 million.
Holtzman said the judges evaluated the companies as they would any investment, and they particularly liked both the real market opportunity and the strong intellectual property component of BaroStitch’s pitch.
The Next Startups Set to Fuel the Health Care Industry
In addition to Holtzman, the judges included Nancy Steele, vice president of external ventures for Pfizer Consumer Healthcare, and Marti Nyman, vice president of market innovation for UnitedHealthcare, among other investors and executives. The presence of such big health care companies was not lost on the audience.
“The health care industry needs startups,” Nyman told the crowd. “You see things differently than big companies.”
Another Stanford Biodesign fellow, Ashley Waring, now runs Carpadien, which produces what she called “a revolutionary device that can alleviate pain in the wrist from arthritis without medication.” At the moment, the only solution to this debilitating pain, which affects 36 million Americans, is surgery, sometimes a snip of the nerve. Waring drew uncomfortable gasps from the audience when she described an even more common procedure: “a highly intensive bone removal with a corkscrew-like device” that sidelines people for a year.
Carpadien, on the other hand, proposes ultrasound therapy that is noninvasive and can be done in a doctor’s office.
Two companies proposed treatments for hypertension, or high blood pressure. One startup founder, Ben Bowman of Geneticure, called it a “silent killer that affects half of all Americans.” Doctors may tell you to stop smoking and drinking, eat healthier foods and exercise, but if the blood pressure doesn’t return to normal in a few weeks, they start adding drugs one at a time. It’s common that a hypertension patient will need five doctor’s visits over the course of a year, yet the patients still don’t always take their medicine or get their blood pressure under control, Bowman said.
Geneticure represents a foray into the emerging world of precision medicine, where a simple swab of the cheek will help identify the right drug for the right person. Armed with that information, “we’re three times better at getting the patient under control right away,” Bowman said. “It takes four weeks instead of 55, one drug instead of three, and because we’re quicker, we see more compliance.”
Another company, PhysioCue, attacks high blood pressure with a small handheld device that, when applied to the carotid artery for five minutes a day, can shave 20 points off someone’s blood pressure. As an added bonus, you can see the results without needing a bulky blood pressure cuff. And the device connects to an app that can send data to the cloud, so doctors and family members can help monitor the patient.
Hunter Howard of Dallas started Hormone Therapeutics based on his own experience with a mystifying illness. “Two years ago, I had brain fog, headaches, migraines, my energy level was low, I had low testosterone levels,” he said. He suffered from psoriasis and “massive food allergies.” Yet doctors struggled to reach a diagnosis.
“That woke me up,” Howard said. “Here I am, a health care executive in a big medical city and doctors are prescribing medicine to deal with each symptom, rather than the root cause. I thought, if we could find the right test with the right guidance, we could help people lead longer, healthier lives.”
He said the problem is endemic in the modern medical system. Doctors aren’t taught enough about the endocrine system; they focus on crisis management rather than preventive care and they too quickly dismiss ailments, saying, “That’s a normal part of aging. We’re not going to treat that.”
Hormone Therapeutics sells a “360 degree health optimization platform” starting at $200, running tests and giving people coaches — physicians who practice telemedicine.
“Our mission is to add 20 healthy years to every life,” Howard said.


Startups to Age Healthier Look to Silicon Valley for Support

Dan Fost

When my husband was diagnosed with leukemia in 2007, friends and family rushed in with good intentions. To me, they offered eyes crinkled with concern and murmurs of, “I can’t imagine.” To Joe, they offered words of encouragement. “You’re in such good shape,” they’d say. Then, realizing how absurd those words sounded, they'd quickly add: “Well, you know what I mean. You’re strong. You’re athletic. You’ll beat this.”
 
To Joe, such pep talks carried a very different message: “You’re going to die.” So when he entered the hospital to begin treatment, he turned off his cell phone and unplugged the room’s landline, and that’s how they remained over the next six months as he withstood four rounds of chemo, then a stem cell transplant. I understood. “Focus on building your strength and getting better,” I told him. “I’ll take care of everything else.”
 
(MORE: 6 Ways You Can Help a Friend Who is Sick)
 
I did not expect this to be easy. I had a day job; we had a daughter; there was a home and bills that required attention. In addition, I now had to manage Joe’s email, medical bills, friends and relatives. Moreover, I wanted to be with him at the hospital at least eight hours a day, both to break up the monotony for Joe and to keep a close eye on his mood, health and needs.
 
None of that, however, proved as challenging as navigating the well-meaning concern that threatened to smother me. With every sympathetic look, every compassionate hug, every expression of consolation, the people in my life unwittingly reinforced the obvious: I was at risk of losing my beloved husband. Frankly, I didn’t need the reminder.
Worse still, I felt a (perhaps bizarre) responsibility to ease their concern. But I was already weighed down with worry. Having to convince others that Joe and I would be fine was just plain exhausting.
 
To Help, Share Your News
 
By the time Joe began treatment, four days after his diagnosis, I was already backing away from the well-intended concern. It wasn’t just that people’s questions were repetitive and their upset imposed a weight I found difficult to bear. More concerning, it drained the energy I needed to carry out what I regarded as my main job: propping up Joe’s spirits.
Because the chemo for leukemia destroys the immune system, I was the only non-medical visitor allowed to enter his room. If I didn’t bring optimism, laughter and news of the world into his room, then what would distract him from his physical and emotional pain, let alone the sheer monotony of hospital life?
 
(MORE: Getting Through Grief By Hanging On to Yourself)
 
When friends and neighbors, colleagues and even strangers would ask, “What can I do?” (and ask they did, over and over), I always offered the same response: “Send Joe an email. Tell him what you’re up to.” That got a wonderful response. Each morning I’d hand Joe printouts of the latest emails. For the next half hour, I’d feel his mood lift as he read the messages of support and love, often rich with remembrances of specific acts of kindness Joe had performed on their behalf. Pure gold.
 
Distraction As A Godsend
 
For my closest friends, I had a different request. “Go for a walk with me. But no questions about Joe. I want to hear about you.” Initially, my friends didn’t believe that I meant it. Joe was sick! Jill might lose her husband! Their daughter, Becky, might lose her father! To them, it was inconceivable that I could think about or want to talk about anything but Joe’s condition. They were right about that first part, but wrong about the second. I really did want to hear about their lives.
 
Here’s why. The worrying? That part I could do all on my own. But if I listened closely enough to what friends were sharing about their lives, I was able to set aside thoughts of Joe for a few minutes and enter back into the multi-dimensional world where people juggled jobs, husbands and children; discussed books, politics and writing projects; savored music, theater and travel.
For those few minutes, I slipped the constraints of being the wife of a very sick man, and reconnected with the Jill who was also a mom, a writer, a reader, a newshound, an athlete. I smiled; I laughed. Though the respite never lasted long, it was always renewing to break free of the bonds of worry. My mood would lift, replenishing the reserves of energy I needed for my daily visits with Joe.
 
Over the next two and a half years, as Joe withstood treatment and then setbacks, I leaned on the companionship of the few people who understood. Their conversation and laughter reminded me that there was a world beyond the hospital room, one that I would someday rejoin.
 
During those years, I also continued to struggle with the tired cultural script that came at me from all directions, persistently reinforcing my worry. “How’s Joe?” townspeople would ask in the aisles of the supermarket. “How’s Becky doing?” fellow parents would ask at school events. “How are you?” colleagues would ask in corridors, in elevators — even in the ladies’ room.
 
Then, in 2009, Joe died. The furrows in people’s eyebrows deepened. Their touches lingered longer. The script grew more insistent. Stunned and bereaved, I tried to draw comfort from the sympathy and support, and see past the obvious pity. But within weeks, all that well-intended attention began to feel smothering. I wanted out. This wasn’t an attempt to evade or deny my grief. (As if!) But I was beginning to realize that soaking in other people’s reminders of my anguish was not going to help me tolerate my pain.
 
(MORE: A Surprising Way to Handle Grief)
 
Smiling And Laughing Provide Respite
 
Once again, I pushed the conversation outward and away from me. “Tell me about you,” I said over and over. Given a compliant companion and a concerted effort on my part, I was sometimes able to move aside from my anguish and connect for a few minutes with somebody else’s life, concerns and challenges. In return, I often heard the refrain, “You’re amazing.” For me, such pep talks carried a very different message: “There’s something wrong with your grief.” 
 
Six years later, I know there was nothing wrong with my grief. Rather, I was what modern bereavement researchers call “resilient,” a term that refers to those people — the majority of mourners, as it happens — who experience their grief in waves. For such people, feelings of sadness oscillate with feelings of pleasure and enjoyment throughout the day. Research indicates that opportunities to smile and laugh are particularly key to providing the bereft with respite from their pain.
 
In my experience, the same holds true for caregivers. That’s worth keeping in mind the next time you reach out to someone grappling with a loved one’s illness. All of us come armed with good intentions. But those who can remain mindful of the whole person, rather than seeing only their worry, stand a better shot of providing support that truly helps. 


How To Help a Grieving Friend

Jill Smolowe


Around the time Sana Goldberg began nursing school, her grandfather had a serious, undetermined health problem.
"I remember from the moment of entering the ER to the week later when he was dismissed from the hospital — having such a sense of confusion about what was going on," Goldberg, a nurse who practices in New Haven, Conn., recalls.
Although Goldberg's mom was a doctor and Goldberg herself had worked extensively in hospitals and been around this, she'd never before been so intimately connected to the process of dealing with a significant medical issue.
To have a really solid primary care provider is too important to compromise on.
"Because I'm a reader, I went and looked for books, and I couldn't find much that I felt like was a really good resource," Goldberg says. "There are a lot of books out there about hospital safety or how to communicate better with your doctor. But they all were sort of paternalistic and didn't really get at the core of what I was trying to figure out."
It hit Goldberg that this kind of "how to" information — all compiled into one place — would be profoundly useful for people to have on hand.
"I thought it would be really great if this could be distilled and given to patients because the health care climate is really difficult right now for a lot of people. And so to have better tools to interface with that — I think people are wanting to have that."
Her book, How to Be a Patient: The Essential Guide to Navigating the World of Modern Medicine, breaks down a wealth of information and expertise into easy-to-understand (and easy-to-find in times of stress) chapters and sections like "How to Choose a Primary Care Provider" and "When You Can't Get a Diagnosis."
Chapter 23 goes in-depth on "When You're Getting Older (Or When It's Your Parent)," with plentiful guidance on switching to a geriatrician, mental health and loneliness, transportation, end-of-life choices and more.
This is the type of book you keep in a handy place and reference as life happens and issues come up. It's friendly, approachable, realistic and takes into account the ways modern medicine is not always fair to patients of various genders, sexual orientations, races and ethnicities. Next Avenue asked Goldberg to expand on some of the most intriguing and relevant parts  in her book:
Next Avenue: In the book you discuss 'unlearning' things. What are some of the main things you'd like people to unlearn about health care and how it works?
Sana Goldberg: Unlearning the idea that your role as a patient is to be passive and be a recipient of directions and orders. You show up at the doctor, they tell you what to do, you never question somebody in a white coat. This system then becomes really intimidating and you don't question it, and it becomes OK that a lot goes on that you might not understand.
Knowing that you have agency during medical encounters is really important, and to unlearn this deference to medical providers.
Self-advocacy at the doctor is intimidating for a lot of people. What do you recommend to people who are scared to speak up or ask questions that might seem accusatory or like they're questioning the doctor's authority?
What I always tell people first is to acknowledge that the system is imperfect. Even a doctor that you have a lot of trust in is still working within a system that's imperfect.
So it's OK to think of yourself as working with them to figure something out rather than directly challenging their authority.
I tell people it really helps to write down your concerns or questions before you go in rather than being on the spot and knowing the clock is ticking. Think about what you want to say and have that in your mind before you go in.
And having an advocate with you can help to bolster your courage in a situation — to feel supported by somebody.
Your book has an entire section about bringing an advocate to the doctor. You suggest always bringing an advocate to appointments and you detail who that person can be and how you can choose them. Some people might be nervous to bring an advocate to appointments, especially if they feel like they should be able to do everything themselves. Why is it so important for people to bring an advocate along?
I get questions about this a lot. [Needing an advocate] is a really strange statement to make and I think it's pretty foreign, especially for a high-functioning adult or someone thinking about privacy.
My goal is to get people to reframe how they think of their health care and how they interact with their health care. And so to have a consistent person who is up to speed on what's going on with your health care — the long-term goal is that you have a person who can build a relationship with your providers and be your advocate if something more pressing comes along.
In a hospital setting, it's really important to have another pair of eyes. In an appointment, the same thing holds because it's usually such a short time period.
A lot of times, people are nervous because it's intimidating to be around medical professionals. Or people feel like they've been waiting so long to get an answer and [the doctor] is the person who can help, and they've got to make the most of this. It can be daunting.
Have another person who can remember a question you might've forgotten to ask or who can be there just to receive information that you might not be able to pay attention to because your mind is on other things.
Something we hear from readers is that it's difficult to communicate with doctors and feel like you have enough face time with them. You touch on this in the book. What's your advice?
Before you go in, think about the timeline of your symptoms. So rather than saying, 'This started hurting, I don't know, sometime last August,' you're able to talk about the frequency of the pain, how long it lasts and what you've tried to do to remedy it that hasn't worked. Really thinking dynamically about the problem you're going in for and having prepared a little elevator pitch of how to talk about it.
The second thing I would say is being comfortable asking questions — and not only just asking questions and getting answers, but being sure that when you're given an answer, it's given to you in a way that you can understand.
As medical professionals, we work a lot on health literacy and making sure on our end that we're not just speaking gibberish over somebody's head. But patients are really reluctant. There's this eagerness to please and just say, 'Yeah, I understand,' even if you don't know because it wasn't communicated very well. So just keeping in mind that it's OK to say, 'Can you explain that in another way? I didn't understand.'
The last thing is feeling comfortable reining the conversation back in if you feel like it is going somewhere that wasn't the place that you intended or something that you brought up wasn't prioritized in the way you hoped.
What should you do if a doctor isn't responding well when you speak up or ask questions?
Firs,t try some of those skills like challenging something or trying to redirect the conversation. But ultimately my stance is that if you don't feel like you're heard or you can't have a productive conversation when you're trying to communicate with your provider, then it's probably good — especially if it's a primary care provider — to find somebody that you can communicate with.
And that's especially important if you're older and you have different parties involved in your care and you have to be this conduit of information between them.
To have a really solid primary care provider is too important to compromise on. You can try to advocate and have agency in those interactions and use the tools that are in the book, and then if it doesn't work, I always think it's OK to find somebody new.
This story is part of a series for The John A. Hartford Foundation.

How to Be a Patient: A Comprehensive Book on Exactly That

Grace Birnstengel

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