Being unwell can be an isolating experience. Patients can often be unsure of where to turn for support and for many illnesses (especially those that are uncommon), research funding and subsequent treatment options can be limited, making the experience even more lonely. Over the last few decades, many celebrities have come forward to publicise their health conditions, whether by choice or by force, often leading to increased awareness and charity support. But should they be obligated to do this, and what is the real benefit?
In this feature we explore the use of celebrities as poster children for disease, and the morals of taking health ownership away from someone before, or after, their death.
What’s in a name?
When you hear the name Lou Gehrig, what do you think of?
Gehrig was a champion baseball player in the 1930s, who was diagnosed with what is now known as ALS – although the star’s prominent struggle with the condition led to the illness being dubbed ‘Lou Gehrig’s disease’ in the US. After being forced to retire due to his condition, Gehrig’s name became synonymous not with his athletic abilities, but his disease. Despite this, during his famous farewell speech, he stated that ‘he had an awful lot to live for,’ and awards exist today for those who show Gehrig’s strength of character in sport, highlighting his life outside of his disease.
So, what did you think of when you heard his name? His life and his sport, which he played until two years prior to his death, or his short illness? For most, it will be the latter. We often hear of people wishing for their family and loved ones to remember them as they were. Why then do we reduce celebrities to their health status after their death?
The Angelina effect
Gehrig’s health struggles may have highlighted the reality of living with ALS, but celebrities had much less influence in the 1930s than they do today. A more modern example that took the world by storm is ‘the Angelina Jolie effect’. The Oscar-winning actress and keen humanitarian underwent a double mastectomy in 2013 following the deaths of multiple family members due to breast and ovarian cancers, caused by the presence of a harmful BRCA1 variant. Two years later, Jolie underwent a second procedure to remove her ovaries and fallopian tubes after early cancer signs were detected.
Jolie chose to go public with her experiences, stating that she wanted other women to be aware of the risks of cancer and to take the necessary action to prevent illness. And she certainly succeeded; in the United Kingdom alone, BRCA screening uptake more than doubled. The effect continued for years after the fact, highlighting the impact that a high-profile individual can have on healthcare efforts.
On the other hand, concerns were raised as to whether the Angelina effect caused needless hysteria, with some women rushing to get tested and others opting for preventative mastectomies without necessarily realising that there was still a chance of getting cancer. Some even opted for mastectomies as a breast cancer treatment, even when this wouldn’t be any more effective than alternative, less invasive procedures.
This brings to light a problem with having celebrities spearheading a movement; as much as Angelina Jolie did not intend for this to happen, her influence may have caused many to mistakenly follow her lead. Research revealed that the percentage of women who received positive BRCA results in the wake of the Jolie effect remained constant, despite the increase in overall testing number, and that the number of subsequent mastectomies did not significantly change. This indicated that a large number of tests were taken by people who did not necessarily need them. However, ultimately, the consensus was that Jolie’s experiences had a positive, long-term impact on cancer awareness.
The role of family
Encouraging people to get tested isn’t the only impact a celebrity can have. In 2022, actor Bruce Willis retired, citing a diagnosis of aphasia – a disorder that impacts an individual’s ability to communicate. However, in early 2023, the actor’s family released a statement confirming that Willis had been diagnosed with frontotemporal dementia.
Whilst his diagnosis shocked the world and informed many about the realities of living with dementia, there is little that can actually be done for those with the condition. So, unlike the Jolie effect, there was no rush of life saving interventions. That said, the family’s statement highlighted the long wait times for diagnosis and the struggles this can cause for patients and loved ones alike. They hoped that by raising awareness of the symptoms, the diagnostic process could become quicker and less complex, making the situation easier even if there is ultimately no cure. Likewise, the family highlighted resources for those with a loved one with the condition, aiming to the make the journey less lonely for all involved.
A question of testing
But what about when a message gets muddled?
In 2022, actor Chris Hemsworth announced that he had tested positive for having two copies of the APOE4 genetic variant that is linked to Alzheimer’s disease. This significantly increases Hemsworth’s chance of developing the condition in the future. He is one of only around 2% of individuals who inherit two copies of APOE4.
Following this revelation, which he detailed in a documentary aired on Disney+, the 39-year-old Thor actor decided to take a break from acting to enjoy life with his family and recuperate following the shock. He also highlighted the environmental and behavioural methods one can use to further decrease the risk of Alzheimer’s in his situation, such as adopting healthier sleeping patterns.
Whilst Hemsworth himself was keen to stress that the genetic result was not deterministic, clickbait headlines were inevitable. Within days, reports of Hemsworth’s ‘illness’ were being widely reported in the media. Much like the Angelina effect a decade prior, many rushed to assess their own personal risk, something that can be dangerous and upsetting if you do not understand the nuances of genetic testing. In fact, experts had to warn individuals not to seek out at home testing for Alzheimer’s genes, suggesting that this should only be done in a medical environment where the appropriate support and advice can be provided.
Whilst Hemsworth of course had the right to share his own health journey, the publicity did garner criticism; should the actor have shone a spotlight on this genetic variant, when so many would misunderstand the reality of having it? Or, was this simply an example of the media twisting a celebrity’s personal story to obtain clicks?
The Michael J. Fox Foundation
Another example of a celebrity with a life changing illness is Michael J. Fox. The Back to the Future star was diagnosed with Parkinson’s disease when he was just 30 years old. He kept his condition under wraps until 1998, and in 2000 created the Michael J. Fox Foundation. The charity has pioneered Parkinson’s research and raised hundreds of millions of dollars towards finding a cure. With a prominent figure at the helm, awareness and, subsequently, money can be raised in a much quicker fashion, allowing research to take place that may not have otherwise received funding.
Fox has become a huge Parkinson’s disease advocate since he went public with his condition, and has even gone unmedicated in interviews to raise awareness of the true symptoms of the disease and to make clear the horrors of his illness. He has even appeared in political adverts welcoming stem cell research, which was a hot topic in the 2006 US senate elections. But despite the great things Fox has achieved, the question remains; should he have felt responsible for furthering Parkinson’s disease research, when he himself was suffering?
Ownership after death
Some celebrities may legitimately want to use their platform for good, to improve the lives of others with their disease. Michael J. Fox, for example, has cited his charity work as a positive force in his life, a move he made after initially turning to substance abuse in the wake of his diagnosis. It is clear that this was truly something he wanted to do.
But this isn’t the case for everyone, nor should it have to be. Should we really expect that a celebrity bring their private life to the public eye, even if it could help others?
A particularly stark example of this is Freddie Mercury. Many, especially younger individuals, will see the Queen frontman as a figurehead for the AIDS movement, but the reality is that during Mercury’s life, he kept his illness private. Thought to have suffered from the condition from as early as 1982, the stigma around HIV and AIDS likely played a significant role in the singer’s decision to keep quiet. That said, even without that stigma, he did not have any obligation to publicise his personal health struggles.
But despite his decision to keep his status private, intense media scrutiny in the lead up to his death caused Mercury to make a statement confirming his diagnosis, less than 24 hours before passing away. He cited his reason for making the statement as wishing to have the last word on his own death, stating that he had chosen to keep his health problems private up to that point to protect his loved ones.
This begs the question; is it moral to expect that a celebrity sacrifice the wellbeing of their family and friends, and themselves, in order to set the record straight regarding their health? Whilst the stigma of HIV in the 1980s and 1990s is something that we hope and strive to never see again, speculation about celebrities’ health is something we still read about in tabloids to this day. And whilst Mercury’s struggles ultimately led to the creation of a highly successful charity – the Mercury Phoenix Trust – we’ll never know if this is what Mercury really wanted his legacy to be.
An obligation to your fans?
When asked whether a celebrity is entitled to privacy, the vast majority of people would likely answer yes. After all, they are humans just like us, right?
But what about if that individual owes you something? What if your life is impacted by their health in some way?
A shocking example of a celebrity who faced criticism for not going public with an illness for this reason is Steve Jobs, the co-founder of Apple. In 2003, Jobs was diagnosed with a rare form of pancreatic cancer. He initially chose to keep this private and did not disclose his health condition to either Apple’s shareholders or the public. Following his diagnosis, rumours about his health circulated in the media, and critics argued that as the CEO of one of the world’s most valuable companies, Jobs had a responsibility to be transparent about his health. Shareholders were concerned about how his illness might impact the company’s performance, and many believed that he should have disclosed his health struggles sooner to ensure proper financial planning.
Jobs went public with his health condition the next year after undergoing successful surgery to remove the tumour. However, he continued to face criticism for not disclosing more detailed information about his health in the following years. Jobs resigned as CEO of Apple in August 2011, just a few months before his death. His story highlighted the public expectations that surround the health of high-profile figures, especially those in leadership positions.
Additionally, the ‘Queen of Soul’ Aretha Franklin faced criticism for keeping her health issues private. In 2013, she cancelled several concerts without sharing the specific reason for the cancellations. Later, it was revealed that she was suffering from an undisclosed illness. Fans and the media expressed their concern, but many felt that her status as a public figure, whom many had paid money to see, warranted more transparency about her health condition. However, Franklin chose to maintain her privacy and did not reveal the full details of her illness, pancreatic cancer, until much later.
These cases highlight an important caveat; do celebrities have an obligation to be transparent with their audience, if that audience have invested in them in some way? In both of the above cases, others were affected in some form; Apple shareholders, and those with concert tickets. But does this truly mean that an individual must give up ownership of their own health struggles?
The importance of personal choice
Many of the cases we have discussed above have had positive impacts on disease awareness and charity work. And we cannot comment on these individuals’ personal reasons for coming forward – perhaps they felt no pressure to do so at all. Likewise, there may be a number of celebrities out there suffering from health conditions that we know nothing about, who feel secure in their choice to stay silent.
But undoubtedly, many celebrities have felt that pressure, and have had ownership of their health and legacy snatched from them by the tabloids. And despite the positive impacts this may have for the world at large, this could be devastating for the human at the heart of the story.
Which leads us to ask the question – should the price of fame be a loss of medical privacy? A lively debate could be had over this topic. Fame generally comes at the cost of a public personal life, but should this really extend to someone’s health?
We hope that most people agree that each person should be allowed to process their diagnosis in the way they see fit. As fans, truly appreciating someone should come with an acceptance of how they want to react to their diagnosis. Most people may believe in individual privacy, but it’s something that is often forgotten when it comes to the famous.
Promoting awareness for conditions is a powerful and effective thing to do, but it is also taxing and difficult for the individual. For this reason, it should be a voluntary undertaking, regardless of your position in the public eye.