We Talked About the Future of Health…Now We’re Living It | Deloitte US has been saved
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By Andy Davis, FSA, MAAA, principal, and Lynn Sherry, senior manager, Deloitte Services, LP
By the year 2040, Deloitte expects consumers will have control over their own interoperable health data and will use it to make medical decisions. This vision was outlined in our landmark 2019 report on the Future of HealthTM. We also expect to see much more focus (and investment) on well-being, early detection, and prevention, which will likely reduce the amount of money spent treating late-stage diseases.
We have both been talking this talk for the past several years…at meetings, in reports, and in our work with clients. The two of us are now walking the walk.
Last Christmas, my wife surprised me with a 23andme genetic test kit. She understood that this gift would feed my passion to be more informed. It turned out to be a more significant gift than either of us knew at the time. I learned that my mom is not Italian, my red hair is likely linked to my Irish lineage, and I can justify why I sneeze in the sunlight more than others. I also learned that I am genetically predisposed to developing Alzheimer’s disease. By the time I’m 80, there is an 80% chance that I will have it.
We all inherit a copy of the APOE gene from each parent. A mutated version of this gene— APOE-e4—has been identified as having a close relationship to Alzheimer’s disease. Between 40% and 65% of people diagnosed with Alzheimer's have a mutated version of that gene. People who inherit one copy of APOE-e4 from their mother or father have an increased risk of developing the disease. Those who inherit a copy from both their mother and father have an even higher risk of developing the disease, but it is not a certainty. An estimated 20%-30% of individuals in the US have one or two copies of APOE-e4. I’m part of the 2% of the US population that has two copies.
Almost immediately after digesting my results of the genetic test—and understanding what my grandfather went through when my grandmother had Alzheimer’s—my wife and I looked at the potential financial implications and discussed how to protect our income and the investments we’ve made. As a result, we made changes to protect our assets and increased our health insurance coverage.
As for other actions, there is limited data about lifestyle changes and preventive measures I could take to delay the onset of this disease. I already exercise regularly, and I eat a pretty healthy diet. Knowing the implications of smoking, I have reduced the frequency of my occasional cigar. Some research indicates that reading or doing jig-saw puzzles can delay the onset…I’m hopeful that playing cribbage counts. My father and I now have almost-nightly video cribbage games to help keep our minds active. While a web search can help me identify certain activities that can help, I can’t link them to progression 10 years down the road. In the Future of Health, I’m hopeful that data, artificial intelligence (AI), and enhanced sensors will help link my healthy habits to a reduced risk for the onset of Alzheimer’s.
Knowing that both of my parents passed along a mutated gene has created a heightened sensitivity to the impacts of the disease—not just to me, but to my parents, my sister, and my children. Over the past year, we have had robust discussions about the implications for the family, and actions we can take together.
To be honest, I was a little hesitant to tell my story publicly. If this information got out, would I be judged in a forgetful moment? I know that this diagnosis won’t affect my employment, and I know my health plan can’t charge me higher rates or deny coverage. But these are genuine concerns that many people have when they receive a genetic test result like mine. It’s a topic my wife and I discussed before Lynn and I decided to tell our stories in this blog.
The Alzheimer’s Association suggests that people speak with a genetic counselor before taking an at-home test. The National Society of Genetic Counselors website provides a searchable directory to locate a counselor. With an unsupervised, at-home test, there is a real possibility of misunderstanding results, which could result in making misinformed health decisions.
I recently returned from a medical leave after undergoing surgery to remove a small tumor—about the size of a pencil eraser—in my breast. This was all set in motion about two years ago when my mom was diagnosed with breast cancer—30 years after she was first diagnosed and treated. On the same day my mom was diagnosed the second time, her sister was undergoing a mastectomy.
Given my mom’s second bout with breast cancer (and the fact that she now had two sisters who had battled it) she decided to do genetic testing—not just for herself, but for her three daughters and two granddaughters.
While the testing revealed that my mom didn’t have a BReast CAncer (BRCA) mutation, she did have a mutation commonly seen in ovarian cancer. This led to my own genetic testing and counseling. While I didn’t test positive for any genetic mutations, it was through the counseling and risk assessment that I discovered I still had a 49% estimated lifetime risk of developing breast cancer. Most inherited cases of breast cancer are associated with mutations in two genes: BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two). While genetics can offer some insight, we still don’t know everything about their link to diseases. And, as my counselor advised me, we still don’t’ know everything about all the genes linked to breast cancer, some of which might still be undiscovered.
Given my assessment, I added MRI screenings to my annual routine, which thankfully detected the tumor. It was so small that it likely wouldn’t have been caught by a routine mammogram for maybe another year. The early detection, combined with the type of surgery I had, meant I was able to avoid chemotherapy and radiation.
Looking back on this experience, I understand the power (and the dangers) of having access to personal health data. The data and risk percentages from my genetic counseling, and the recommendations from my doctor, gave me the power to focus on early detection. I knew my risks and I knew that I was the one who had to decide how to manage them.
On the other hand, access to health information comes with pitfalls. My cancer diagnosis didn’t come from my doctor, it came through an app on my phone. While I didn’t understand the terminology used in my test results, a quick web search revealed that I had cancer. I was devastated and scared…I contacted my doctor immediately. In retrospect, maybe I should have waited for my doctor to call with the test results so she could talk me through them and explain the next steps. By the time she called back, I was already in tears. Many consumers—myself included—like the convenience of having direct access to test results. But we should be prepared for what might come with that empowerment.
Since the diagnosis—and my surgery—I have been exercising more often and trying to eat healthier. There are some foods that I now avoid, like red meat, trans fats, added sugar, and anything processed.
The cost of treating cancer in the US is estimated to be almost $150 billion a year.1 An estimated 42% of cancers, and 45% of cancer deaths, are preventable.2 But prevention of any disease often rests with the patient, their access to health data, and the decisions they make. I tell everybody that, because I knew my risks and was doing what I could to manage them, I am in a much better spot than I could have been.
In 2019, about 80% of health spending went toward care and treatment. By 2040, we expect 60% of spending will go toward improving health and well-being, according to our 2021 report on the future of health spending. In the future, we expect consumers will have access to more actionable data. We also expect more programs will be available to help people prevent or delay the onset of certain diseases. Today, we often have to rely on disconnected data when making decisions about our health. Effectively managing health and wellbeing might require consumers to take steps to prevent disease in the first place, through diet or exercise, or through early screenings. Data, access to information, and risk assessments can only take us so far. The biggest question for health plans, clinicians, health systems, and life sciences companies might be how to tap into an ever-expanding set of health data and turn it into actionable insights for the average consumer.
1. Cost of cancer care reaches nearly $150B nationally, HealthPayer Intelligence, xtelligent HealthCare Media, January 15, 2020
2. More than four in 10 cancers and cancer deaths linked to modifiable risk factors, American Cancer Society, November 21, 2017
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