Social Issues and Stroke

Apathy around National Stroke Awareness Month is real

I have spent the past week debating whether to post publicly about an email I received from The State (South Carolina’s most widely distributed daily newspaper). Ultimately, I concluded that it was important to do so. Stroke patients need a voice, and while The Stroke Blog was started to empower the younger stroke population through sharing information pertaining to their circumstances, empowerment leads to advocacy.

Following my post on May 18, 2017, Call To Action: Americans Fear Terrorism More Than What Is Likely To Kill Them, I decided to submit the text to The State in hopes of reaching a broad audience in a place that lies in the heart of the “Stroke Belt.” Over half of hospital admissions for stroke in South Carolina involve patients under the age of 65. It seemed an appropriate medium for providing education about stroke during National Stroke Awareness Month.

The email response I received from one of the editors, frankly, shocked me: “THanks [sic] but we’ll have to pass. We don’t generally run columns on all these made-up months, weeks and days…”

“Made-up months”?

I had difficulty understanding what prompted this. Stroke has created a public health crisis, has disabled millions of Americans, and remains the fifth leading cause of death in the U.S, killing over 130,000 people annually in our country. In addition to these alarming numbers, according to the National Stroke Association, as many as 80% of strokes can be prevented. Plus, we have effective treatments within the first few hours of when a stroke starts! Therefore, stroke seemed like the perfect condition upon which to build more awareness. It’s devastating, but we have the power to change that on a large scale, both through preventative efforts and by rapidly treating strokes when they occur.

After deliberating, I replied to this particular editor, and explained that Stroke Awareness Month was being recognized by the mainstream media and hospitals across the country. This person’s quick response was that all months/days devoted to causes should be viewed the same way, whether they were about heart attacks, diabetes, “or chocolate of bicycling or … anything.”

At that point, I called a friend who has worked with hundreds of stroke patients professionally, and asked her what I was missing. I understood that there were numerous “_____ Awareness Month” recognitions, but it made perfect sense to me that the importance of calling 911, the recognition that prompt medical attention can save a person from lifelong disability, the understanding that stroke is not just a disease of the elderly, that education about the importance of smoking cessation was critical, that the knowledge that patients with high blood pressure should comply with taking their medications would all be important points for coverage in the media. And raising awareness around issues that can lessen the incidence of a disease that kills so many people annually still seemed like a good thing to me. As much as I love chocolate (and I do – seriously), lumping awareness around stroke and awareness around chocolate into the same statement rubbed me the wrong way.

In talking with my friend, she reminded me that Stroke Awareness Month was, indeed, “made up” – by President George H.W. Bush in 1989 when he signed a proclamation declaring every May as “Stroke Awareness Month.” I then began reading articles, editorials, and reflections about Stroke Awareness Month, and contemplated how important this time is to so many people affected by stroke. One of my favorites was a piece by Kirk Douglas from 2014 on The Huffington Post (click to read it).

I truly believe that everyone has the right to his or her opinions, and the right to express these opinions with language. The State can makes its own choices about the importance or lack of importance of Stroke Awareness Month, and I can make mine. I believe we do need more awareness around stroke, because I want to be treating more patients with t-PA and mechanical thrombectomy, but I can’t if they don’t call 911 or get to an emergency department quickly after a stroke starts. If they lie down on the couch to take a nap, there is a good likelihood that it will be too late to treat them once they show up at a hospital. That decision – whether to call 911 or lie down – often alters the course of a person’s life, determines whether that person will ever return to work again, will be able to care for himself or require assistance from others for decades to come.

What ultimately shifts people in the 911 direction over the lying down direction?

Awareness.

Call To Action: Americans Fear Terrorism More Than What Is Likely To Kill Them

The 2016 Chapman University Survey of American Fears gave me pause for reflection. Leading the list of what strikes fear into the more than 1,500 Americans surveyed was “corrupt government officials” (60.6% of respondents), followed by terrorist attacks (41%). Much farther down the list, only 20.3% reported “becoming seriously ill” as a cause for concern.  

As a physician who spends her days caring for patients with strokes, or “brain attacks,” I wondered how many strokes we could avoid entirely if people feared brain attacks as much as they fear terrorist attacks. According to the Centers for Disease Control, more than 795,000 strokes occur in the United States each year. An individual’s lifetime odds of dying from a stroke are approximately 1 in 31, and stroke remains the fifth overall leading cause of death in our country. What are the lifetime odds of dying at the hands of a foreign born terrorist? According to the National Safety Council, only around 1 in 45,808.

A stroke is a permanent brain injury, resulting either from a blockage preventing blood from reaching part of the brain (ischemic stroke), or from bleeding occurring in the brain (hemorrhagic stroke). While rehabilitation can assist with improving a stroke survivor’s ability to function, the injury to the brain is not reversible. Skin cells may regenerate within a wound, but cells in the brain do not. Common stroke symptoms include, but are not limited to, weakness on one side of the body, numbness on one side, sudden visual loss, slurred speech, drooping on one side of the face, and/or difficulty producing coherent words/sentences.

May is National Stroke Awareness Month, a time during which amplified efforts take place to raise public recognition of the disabling and fatal impact that stroke brings. The good news is that most strokes are preventable, but this requires effort. Just because a patient feels well does not mean that high blood pressure should be ignored. Cigarette smoking is harmful to the brain and its blood supply, but quitting is tough and requires resolve. Diabetic patients with high blood sugar readings should take these seriously and work with their healthcare providers to bring these under control. High cholesterol measurements also warrant discussion between patients and providers.

There are three major educational points I wish to make during National Stroke Awareness Month, in hopes that we can join together to prevent strokes and the horrible aftermath they produce.

1.            Atrial fibrillation is a type of irregular heart rhythm that can dramatically increase the risk for stroke. There are now a number of medications that can substantially lower the risk of stroke in these patients. If you have atrial fibrillation, it is critical that you discuss with your healthcare provider whether he or she recommends starting one of these medications.

2.            Obstructive sleep apnea is another condition that places patients at higher risk for stroke, as well as many other disease processes that can also make a stroke more likely to occur. If you have obstructive sleep apnea, please work with your healthcare provider to find an effective way to control it. Your brain will appreciate it.

3.            Stroke is not just a disease of the elderly. I frequently see patients in their 20s, 30s, and 40s presenting to the hospital with strokes. As frightening as it may seem, stroke also strikes during childhood. Tissue plasminogen activator (t-PA) is a medication that can help to dissolve blood clots when a stroke begins. Multiple studies have demonstrated that treatment with t-PA increases a patient’s chances of living independently three months after a stroke compared with those who do not receive t-PA. However, t-PA is only beneficial within the first 3 to 4.5 hours after a stroke begins, and every minute that passes decreases a patient’s chance of reaching that independent outcome. Regardless of age, when stroke symptoms start, the right call to make is 911. A person is never too young to have a stroke.

I remain much more fearful of having a stroke than I do of losing my life in a terrorist attack. Yes, national security is an important issue; however, as we battle threats that are much more likely to kill and disable Americans than terrorist attacks, let us place our fears where fear is warranted, and channel this energy into action.

Disability Income In The United States After Stroke Made Simple

Some of the topics I spend the most time discussing with patients and their families who are facing the aftermath of stroke have nothing to do with actual medicine. Medical school, residency, and fellowship provide the opportunity for physicians to learn that drug A treats condition B, and that we use drug C because Clinical Trials X and Y suggested it is beneficial. When physicians enter the world of clinical practice, while our patients depend on us to guide them in making decisions that impact their health, they also want to answers that physicians are not formally trained to answer. Personally, the non-medical topic I find myself discussing the most frequently with stroke patients is the process of applying for disability income in the United States.

The first time a patient asked me why she was turned down for social security, I had no idea. She clearly was physically disabled from her stroke. I had completed the appropriate paperwork sent to my office. I could see she was visibly upset at being denied this needed income, and I felt guilty, as if it was my fault in some way, despite having meticulously completed the forms. What happened?

Fast forward to 2015, and I think I have gained more insight into why this scenario occurs. My disclaimer here is that I am not an attorney, employed by the federal government, or a certified account, so what I am sharing is what I have gained watching hundreds of stroke patients navigate the process. Patients frequently do not understand how the system works, and many healthcare providers don’t either. To be perfectly frank, I am naïve to all of the inner-workings of “the system,” but I can boil it down to a few key points that I hope will provide clarity to anyone out there living with neurological deficits after stroke and seeking answers.

Stroke patients in the United States essentially have two options available for long term disability income:

  • If a long term disability insurance policy was purchased prior to the stroke from a company such as The Hartford, MetLife, or Liberty Mutual (these are only a handful of carriers out of the many available), then an application can be filed. The patient’s healthcare provider, usually a physician, will be asked to complete paperwork, and copies of relevant medical records will be requested.
    • Typically there is a waiting period, which is variable. If a patient has short term disability insurance, income from the short term disability policy can be used for part or all of the waiting period until the long term disability income is available. If there is no short term disability policy in place and no sick leave available, there is usually a lengthy unpaid period as the patient waits.
    • If a patient improves over the course of the waiting period, even if a long term disability policy is present, the patient may not be eligible to receive income if the level of disability cannot be verified in the medical records or from the paperwork completed by the healthcare provider.
  • Then, there is social security. This has to be one of the most misunderstood systems in the U.S. Patients have so many different ideas of what social security is, how it works, how one receives benefits, and so on. The National Stroke Association does a fantastic job of breaking down social security on its website. Click here if you would like to read more.
    • In the example I mentioned above, the reason the patient was denied social security income was not because she was not physically disabled, but because her stroke was less than one year old. Her stroke was too recent. The condition has to be expected to last “at least 12 months.” My advice to stroke patients who have been denied social security income if they applied less than one year after the stroke is to reapply.
    • If a patient is already receiving social security income because of his or her age (let’s say – a 70 year old patient who has been receiving social security income for five years), then the patient is already receiving the money! People do not receive double the amount of money for becoming disabled over the age at which they become eligible to receive social security income.
    • If an adult has never worked, or worked but somehow never paid into the program, or if a person worked but did not contribute enough to the program while working, then a person is probably not eligible to receive social security income. If there are questions about your personal situation, I recommend contacting an attorney with expertise in this area. It’s important for patients to understand that social security is an annuity, meaning that people pay in to the program as an insurance policy. In return, money is paid out, either when a person becomes disabled or when a person reaches retirement age.