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

(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.

(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

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

No doubt you’ve heard about intermittent fasting, which is getting buzz for good reason. Growing evidence supports the health benefits of this pattern of eating in which you alternate periods of eating with periods of fasting.
Studies show that intermittent fasting not only helps people lose weight, it may also improve brain and heart health and even increase exercise performance, says Mark P. Mattson, chief of the laboratory of neurosciences at the National Institutes on Aging, who has conducted several studies on intermittent fasting.
One big mistake people make when doing intermittent fasting? "They think they can eat whatever they want during their feeding window."
Research is also ongoing in how intermittent fasting might work against specific diseases, including cancer and cognitive impairment.
Interested in trying it? Here’s what you need to know before you put it into action:
Three Methods of Intermittent Fasting
At first glance, intermittent fasting might seem simple, but it’s actually a little more complicated than it sounds. That’s because there are three ways to do it:
The 5:2 fast: With this method, you eat normally for five days during the week. Then for two non-consecutive days, you generally eat less than 600 to 800 calories per day. This type of diet is called “fasting mimicking.”
Time-restricted feeding (TRF): There are several versions within this category. “With TRF, you limit your feeding window to a certain time period, the most common being eight, ten or twelve hours,” says Dr. Ian K. Smith, who writes books about nutrition and diet and who served two terms on President Obama’s Council on Fitness, Sports and Nutrition.
Here's how TRF fasting times would look: 16:8, in which you fast for 16 hours and feed for eight hours; 14:10, in which you fast for 14 hours and feed for 10 and 12:12, where you fast for 12 hours and feed for 12. For instance, with the 12:12 approach, you might stop eating at 7 p.m. and start eating again at 7 a.m.
The 24-hour fast: The premise of this daily diet is simple: “You basically eat dinner every day and then restrict your calories the rest of the day,” says Dr. Richard Firshein, who specializes in integrative, anti-aging and precision medicine.
The 24-hour fast is another example of a fasting mimicking diet in which you consume under 150 to 200 calories for both breakfast and lunch so you’re eating about 400 calories until dinner. After that, you eat a regular dinner.
While Safe for Most, Some Should Be Cautious
What you may not realize is that you’re already doing a form of intermittent fasting. “Every night you go to sleep, you’re technically fasting,” Smith says, adding that when you officially engage in intermittent fasting, you’re simply increasing the fasting period around your sleep.
This is one reason intermittent fasting is generally safe for most people. “For the vast majority of people who are healthy without medical issues, intermittent fasting won’t be counterproductive or deleterious to them.” Smith says.
However, there are some people who should be cautious —  if you have a health issue such as low blood sugar, diabetes or low or high blood pressure. You also need to be cautious if you’re underweight, have a history of eating disorders or you’re taking medications.
“If you’re seeing your doctor for a specific health issue, then you should definitely review (with your doctor) all of the risks before you do intermittent fasting,” Firshein says.
Intermittent fasting is not a good idea for children or pregnant or breastfeeding women either.
Intermittent Fasting: Give It Time
If you’re interested in trying intermittent fasting, consider which method will fit best into your lifestyle and goals for weight and fitness. And regardless of which type you choose, proceed slowly.
“Studies show that it can take up to a month for people to adapt to going each day or a couple of days a week not eating much food,” Mattson says. If you’re used to eating three meals a day plus snacks and you decide to start skipping breakfast, you’ll be hungry in the morning for several weeks. After a month, however, that hunger usually will dissipate, Mattson says.
With TRF in particular, it’s a good idea to gradually shorten your feeding window over a two-month period, especially if you’re shooting for an eight-hour feeding window, he notes.
If you want to try the 5-2 method, start with one day a week for one month. If that goes well, move to two days a week, as long as they’re not on consecutive days, Mattson says.
Eat Healthy and Stay Hydrated
One big mistake many people make when doing intermittent fasting? “They think they can eat whatever they want during their feeding window,” Smith says. Yet nothing could be further from the truth.
If good health is a goal, it’s always important to eat a healthy diet during the feeding window. This includes fruits, vegetables, nuts and fish, while avoiding refined sugars, high fructose corn syrup and saturated fat, Mattson says.
And while you won’t be eating during the fasting window, you should still make sure you’re staying hydrated. Water (even sparkling water or water infused with fresh citrus), coffee and tea are perfectly fine to drink during these periods, Smith says.
Of course, before you begin fasting, check with your doctor and consider the pros and cons. And while intermittent fasting may not be for everybody, there’s no doubt that eating healthier is the key to health for everybody.


Comparing 3 Methods of Intermittent Fasting

Karen Asp

Does your doctor have less faith than you in how you'd handle a diagnosis of dementia? It's possible — and that could have implications for your care.
New research suggests that misperceptions and stigma about Alzheimer's and other forms of dementia may be preventing adults from getting the help they need at two critical junctures that can alter the course of the condition: taking preventative steps and getting an early diagnosis.
According to a new AARP survey, a higher proportion of health care providers (7 in 10) perceive that patients would feel ashamed or embarrassed to have dementia than do patients themselves (1 in 5).
Doctors tend to see the sickest of the sick, a bias that can skew their perceptions of dementia and feed stigmas.
That's a 50-point difference in the data, notes Sarah Lenz Lock, AARP senior vice president for policy and director of the Global Center for Brain Health. 
Doctors who are "afraid of what patients think," she adds, may be less inclined to screen for cognitive impairment and deliver a diagnosis.
"Health care providers know the end outcome and are not really focusing on the positives," Lock says. "But if you think of dementia as a chronic disease instead of as a life sentence, you have a very different view. Older adults get that — they're seeing more people living with it and understand how to adapt and be resilient."
"Folks can live for twenty years and manage Alzheimer's like a chronic disease," Lock says.
One distinction: Patients surveyed were answering hypothetically, while health providers deal with actual dementia patients. Stigma is known to cause people not to seek help for dementia symptoms, other research has found.
Doctors tend to see the sickest of the sick, a bias that can skew their perceptions of dementia and feed stigmas, said Dr. Malaz Boustani, a panelist at the Milken Institute Future of Health Summit and chief innovation and implementation officer for the Indiana University Center for Health Innovation and Implementation Science. 
Other reasons contributing to misperceptions about dementia: The health care system in the U.S. operates mainly "below the neck" with little focus on cognition and brain conditions like depression and anxiety, added Boustani, who also serves on the Global Council for Brain Health.
"And ironically, there's no demand [from the public] forcing providers to do more above the neck, even though we can transplant every organ in the body — except the brain," he said.
Missed Opportunities
Presented at the Milken Institute Future of Health Summit, AARP's "2021 Survey on the Perceptions Related to a Dementia Diagnosis," offers other surprises as well.
While 9 out of 10 patients want to be told of a dementia diagnosis, only 78% of health care providers said they always tell patients the truth. Providers are also more likely to believe patients would want to keep a diagnosis a secret from their families than is actually the case.
About half of adults over 40 surveyed believe it's likely they'll get dementia. In reality, only 12% will.
Stigma is one of the biggest fears around Alzheimer's, AARP research shows: fear of loss of independence (especially driving), emotional and financial suffering and fear of social isolation. 
Boustani calls these the "3 D's:" driver's license, dependency and dignity.
Doctors and patients alike internalize the still-rampant stigma around Alzheimer's, says clinical psychologist Shana Stites, who was not involved in the survey. "And how people think they will react is influenced by stigmatizing beliefs they may hold," she says.
Stites studies Alzheimer's stigma and is a faculty investigator with Penn Memory Center's Penn Program on Precision Medicine for the Brain.
She notes that health care providers still fall into two camps: those who follow up and directly address stigma with patients and those who feel it's best not to disclose anything for fear of harming their patients' quality of life and because they want to protect patients against bad outcomes.
Doctors who have internalized stigmas around dementia, Stites adds, may note the dearth of disease-modifying therapies and avoid offering cognitive tests in the first place. 
"They miss that patients often say, 'Had I known earlier, I'd have done things differently,'" she says, in terms of how they spend their days, prepare their estates or engage in preventative care. 
Early diagnosis is also the gateway to clinical trials and early-intervention therapies like the new Alzheimer's drug aducanumab, marketed as Aduhelm.
When doctors address stigma head-on with patients, Stites' research shows, patients wind up feeling more empowered and less likely to have self-fulfilling negative expectations.
Missed Prevention Opportunities
Another jarring discord unearthed in the AARP survey was between patients' perceptions of getting dementia and what they're willing to do about it.
About half of adults over 40 surveyed believe it's likely they'll get dementia. In reality, only 12% will, Lock says. The survey result declines slightly with advancing age, with those 40 to 49 being most pessimistic about losing cognitive function.
Yet a slight majority of respondents say they don't want, or don't know if they want, a yearly cognitive exam. And while 67% were open to an annual cancer exam, just 46% would like the same for dementia. (About half would like a baseline cognitive evaluation.)
What's more, other research from AARP and elsewhere has shown that adults are slow to adopt brain-healthy behaviors that have been found to alter the trajectory of cognitive decline, like improving nutrition, exercise and sleep. 
"Behavior change is hard," Lock says.
In July, AARP is kicking off a series of events to address the gap between what science now knows works, preventatively, and what people actually do. (In a related outreach effort, through the end of June 2021, its Staying Sharp Brain Health Assessment is free to AARP members.)
Three-quarters of health care providers surveyed agree that adopting brain-healthy behaviors can help. Just 4 in 10 adults are aware there is no cure for dementia, the survey found.
The AARP report was based on a survey of more than 3,000 adults ages 40 and older, as well as a survey of providers in family and internal medicine, geriatrics, neurology and psychiatry/psychology.


What You (and Your Doctor) Don’t Understand About Dementia Might Hurt You

Paula Spencer Scott

(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

(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

As a child, Elizabeth Blackburn did not see her destiny in the stars. She saw it up close, in her own room.
“When I was a teenager, I had a fascination for awhile with amino acids,” said the 68-year-old Nobel Prize-winning molecular biologist. “I drew their chemical structures on huge sheets of paper and plastered my bedroom wall with them.”
She also picked up insects “and other little creatures” and examined them, she said. As a pre-teen, Blackburn read a biography of Marie Curie written by Curie’s daughter. “I knew at once that I wanted to belong to the often-heroic world of science,” she recalled.
Not only does Blackburn now belong to that world, she has become a giant in it. Her work has focused on telomeres, the protective ends of chromosomes, and how they may predict the aging process. With health psychologist Elissa Epel, one of the 2016 Next Avenue Influencers in Aging, Blackburn wrote The Telomere Effect: A Revolutionary Approach to Living Younger, Healthier, Longer. The book, published in January, describes how the way we live influences our “healthspan,” or the length of time we live healthy and active lives.
The telomere research earned Blackburn a Nobel Prize in Physiology or Medicine, along with colleagues Carol W. Greider and Jack W. Szostak.
2017 Influencer of the Year
Next Avenue is very pleased to name Blackburn our Influencer of the Year for 2017 among our Top 50 Influencers in Aging.
A native of Tasmania, Australia, Blackburn earned her Ph.D. from Cambridge University and did postdoctoral research at Yale. She joined the molecular biology faculty at the University of California at Berkeley in 1978. In 1990, she moved to the department of microbiology and immunology at UC San Francisco.
When she got her start, Blackburn was one of a slim minority of women in the male-dominated world of scientific research. Becoming a mother in 1986 gave her a particular sensitivity to later research on mothers caring for children with chronic diseases, she told The New York Times in a 2013 profile. The mothers of sick children had shorter telomeres — a result similar to those of people taking care of spouses with dementia, the article said.
In January 2016, Blackburn became the first female president of the Salk Institute in La Jolla, Calif., which describes itself as a group of scientists who “push the frontiers of discovery in fields such as cancer, neuroscience, aging and plant biology.”
Upon her appointment, the institute’s board chairman, Irwin M. Jacobs, said, “Few scientists garner the kind of admiration and respect that Dr. Blackburn receives from her peers for her scientific accomplishments and her leadership, service and integrity.”
In Her Own Words
We talked recently with Blackburn about her life and work:
Next Avenue: How and when did you initially become interested in research about telomeres?
Elizabeth Blackburn: When I was a Ph.D. student at Cambridge University, I became interested in how to sequence DNA. I carried that interest into my postdoctoral research at Yale University. At that time, not much was known about chromosome ends, called telomeres, but I was determined to understand their molecular nature. I’m proud to say I was the first to describe it as consisting of motifs of particular DNA building blocks, repeated many times, over and over, on every chromosome end.
What is it, in particular, that drives your fascination with the topic?
I’ve always wanted to understand how living things work. Telomeres play crucial roles in the way cells operate, age and die, and thus affect every living creature with linear chromosomes, ranging from fungi and plants to us.
Most researchers don’t write books for a general audience. What motivated you to write The Telomere Effect?
My co-author, Elissa Epel, and I, along with many others, were uncovering important information about how applying the science of telomeres could improve well-being and reduce the chances of chronic disease. But this set of knowledge was scattered across hundreds of scientific journals, often in complex, difficult-to-understand language. We decided to take that knowledge and present it in a readable format.
In short, we wrote the book to put important information into the hands of the public. It’s a good resource for making informed choices about how we live our lives.
What are the most important things individuals can do to gain more years of good health, or increase their “healthspan?” 
At an increasing pace, studies are appearing to demonstrate that exercising regularly, eating nutritious foods, getting ample sleep, managing stress and engaging in positive social interactions all support telomere maintenance and therefore contribute positively to healthspan.
Do you follow your own advice? What do you do for exercise?
I definitely try to. I pursue work that I enjoy. I take an energetic walk along the beautiful Pacific shoreline on the way to my office each morning and on my way home in the evening. I attempt to eat foods that taste good and are also good for my body. And I find time every day to appreciate my family, whether at home or at a distance, as well as my friends and my associates.
Why do you believe your work is important?
Studying telomeres is important because they’re critical to some of the most profound questions in biology: How is our precious genetic material protected? And, why do cells stop multiplying and, to extrapolate from that, why do organisms lose their health and vigor? Currently, we’re uncovering details about how telomeres — and a crucial enzyme I co-discovered, telomerase — are linked with cancer and aging and aging-related diseases, such as stroke, osteoporosis, diabetes and cardiovascular disease. We’re also looking for ways to modify this link in order to combat or prevent disease.
Where do you believe the science of aging will be in five or 10 or 20 years?
As the world’s population ages and expands, I believe we will employ new parameters for defining and measuring health. In other words, your chronological age may be far different from your biological age. I also believe that adding telomere maintenance measures into the mix in precision medicine will provide better diagnostic and prognostic biomarkers. These will guide optimal, personalized strategies for delaying the onset of chronic disease and extending healthspan.
What particular milestones do you want to see?
I would like to see our governments arrive at effective, evidence-based approaches for developing lifestyle recommendations, dietary guidelines, food production systems and public health education. I would hope to see older individuals enjoying a robust healthspan and continuing to contribute to society as valued participants.
What else would you like our readers to know about you or your work?
That fundamental biological research — the kind performed at the Salk Institute, where I am president — is critical to attacking the big questions we need to confront for improving our planet and the health of people living in it. Before we can fix something, we have to understand how that something works. So we investigate at the cellular and molecular levels; then we study systems and how systems work together.
Now we’re able to do extraordinary things, such as harness the immune system to fight cancer and reprogram cellular signaling pathways to preempt disease. The incremental steps of discovery we make each day are destined to have a tremendous impact on the future lives of our families and loved ones.


Elizabeth Blackburn: Influencer of the Year

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