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Sasha McHale's death brings attention to little-understood autoimmune disease

Sasha McHale
Courtesy of the McHale Family
Sasha McHale, the daughter of former Timberwolves coach and vice-president Kevin McHale, died in Minneapolis on Nov. 24 of lupus-related complications.

The tragic death this week of 23-year-old Alexandra “Sasha” McHale has brought public attention to a serious yet little-understood autoimmune disease: lupus. McHale, the daughter of former Timberwolves coach and vice-president Kevin McHale, died in Minneapolis on Nov. 24 of lupus-related complications. According to press reports, she first developed symptoms of the disease in 2011 while in Australia as part of a study-abroad program through the University of Minnesota-Duluth, where she was pursuing a degree in liberal arts.

Lupus affects about 1.5 million Americans, and most — but not all — are women who are diagnosed, like McHale, as young adults, according to the Lupus Foundation of America. To learn more about this common and mysterious disease, MinnPost talked with Emily Gillespie, an immunologist, lupus researcher and assistant professor of medicine at the University of Minnesota. An edited transcript of the conversation follows.

MinnPost: What is lupus?

Emily Gillespie: Lupus is an autoimmune disease, which means that our immune system, which is there to protect us from germs and things that can make us sick, suddenly turns against our own cells and tissues and organs. In doing so, it causes damage to our own bodies and leads to this terrible disease that we call lupus.

MP: What are the symptoms?

EG: The symptoms can vary widely among patients. They can range from fairly benign symptoms like an unexplained rash and joint pain, being tired, weakness, a low-grade fever. But then the disease can escalate and cause more severe symptoms. It can cause damage to the kidneys, severe cardiovascular disease and problems with the lungs and central nervous system.

MP: The symptoms are not always evident to others, correct?

EG: That’s one of the mysteries with lupus. Oftentimes, somebody with lupus looks perfectly healthy. You can’t necessarily look at them and recognize that they are sick with the disease. It’s a disease that ravages from within. That’s frustrating for patients. They frequently hear people say, “You don’t look sick.” People don’t always understand.

MP: How life-threatening is the disease?

EG: Right now, the 10-year survival rate for someone diagnosed with lupus is about 90 percent. That has improved quite a lot over the past few decades due to therapies. But about 10 percent of people diagnosed with lupus will succumb to the disease within about 10 years.

MP: Who gets the disease?

EG: Typically we think of the most likely person to get lupus as being a woman of childbearing age, and that’s certainly the most affected demographic. But men can also get the disease, older adults can get the disease, and kids can get a very bad form of lupus. So while it typically does affect women in, say, their 20s to 40s most often, really anybody can get lupus at any time.

MP: How does lupus affect people’s lives?

EG: It can affect people in a lot of ways. The fatigue associated with lupus is very severe and disabling. It can require hospitalization. It’s a disease that cycles between flares and remissions, and the flares cannot be predicted. So it leads to a lot of hospitalizations, where the lupus escalates sort of out of the blue, and you need to get in and get treated right away. It can cause really permanent damage. It can cause kidney failure. Patients can required dialysis or kidney transplant. It can be really quite severe.

MP: Are we making any progress in treating it?

Dr. Emily Gillespie
Dr. Emily Gillespie

EG: Thankfully, we are. Up until about a year ago, there were only three drugs approved by the [Food and Drug Administration] for treating lupus patients, and they were all very non-specific drugs. But last year we saw approval by the FDA of the first new drug for lupus in 50 years, so this was a really big milestone for the field. This drug — Benlysta — is a more targeted therapy. It targets a very specific molecule that revs up the immune system and contributes to the disease. So this is, hopefully, the beginning of a new frontier where we’re going to see a lot more new drug development focused on more specific targets for patients with lupus.

MP: Why has the disease resisted a cure?

EG: It’s such a complicated disease. We don’t really know what causes it, so it makes it hard to come up with a good cure. We know that it’s a combination of genetic factors and environmental triggers, and fortunately over the past six or eight years we’ve learned a lot more about the genes that can contribute to causing lupus. But, unfortunately, it’s not just one gene or a couple of genes. Right now we know of about 35 genes that work together in some sort of cryptic combination to put somebody at greater risk of developing lupus. And then we have to put that together with environmental triggers. One of these, for example, is viral infection. Viral infection is thought to be a trigger for both the initial onset of lupus as well as the flares of disease that can happen. Exposure to UV light is another environmental trigger. Patients with lupus have to be extremely careful when they go out in the sun to wear their sunscreen and really cover up to avoid letting the sun trigger one of these flares.

MP: What are the research areas most promising for better understanding or curing this disease?

EG: The work that’s happening in genetics is very important and shows a lot of promise. There are also quite a number of new targeted therapies in clinical trials, and I’m hopeful that we will start seeing more of these getting approved and giving us better tools to fight the disease. We’re also looking for better ways to use the drugs we already have. For example, Benlysta, which was approved and can be very effective, doesn’t work in everybody. So there’s a real push right now to try and understand which patients are going to get better with Benlysta. We’re also trying to figure out what we can do with the people who don’t respond to it. What drugs would work well with them? There’s a whole focus on identifying what we call biomarkers that would allow us to better predict who should get which medicine and who’s likely to have an impending flare — all the kinds of things that would make a big difference in the clinical management of patients.

MP: Media-reported lupus-related deaths, such as that of Sasha McHale, must be extremely troubling to people living with the disease.

EG: It’s a scary disease, no doubt. But I hope people will recognize [that we’re making progress with it]. There’s the approval of the new drug last year and the fact that clinical trials are escalating in a way that we’ve never seen before. And research is beginning to blossom regarding the genetics and some of the other factors that contribute to the disease. I think we’re only going to see things improve rapidly over the next few years as we go forward.

FYI: The Lupus Foundation of Minnesota is sponsoring a conference Dec. 15 at the Hilton Minneapolis/St. Paul Airport Mall of America hotel in Bloomington. Physicians, researchers and other experts from around the country will be discussing the latest advances in lupus management, treatment and research. The cost to the general public is $20 for the daylong event. (Scholarships are available.) You’ll find more information on the foundation’s website.

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Comments (4)

Moving forward

First of all, kudos to my grad school classmate for providing some good information, and performing good research, on this topic.

Second, I'd like to point out that new drugs don't simply appear. Basic and translational research needs to be done to understand the diseases we want to treat. Like it or not, that means money--at a lot of levels.

We need to spend money to teach kids how to think critically, creatively, and scientifically. Those are separate skills, and the first two are things Americans excel at, but we're beginning to let that falter through an attempt to streamline education in order to save a few dollars. Without critical and creative thinking, scientific skill only goes so far. That means we need to reconsider providing (or not, as the case currently stands) alternative learning environments for kids with higher and lower learning ability and creativity.

Next, we need to make sure it's affordable for the best and brightest minds to not only get a higher education, but get a post-secondary degree. This kind of research is complex; you don't simply walk out of college with a BS and know how to do it.

Third, even basic research is expensive. Much of it is funded by public grants, i.e., tax money. Not every discovery can make its own money, so basic research is dependent on the foresight to put a dollar down to learn something about how things work. And translational research--the stuff that *might* end up leading to treatments and cures--is dependent on basic research. It puts the basic research building blocks together to result in more complete knowledge and practical application.

Finally, someone has to make money. Money is the great incentivizer. The public whining about how those hoity toity researchers are making *gasp* 6 figures needs to end. Those researchers have invested in their minds and education to provide the public with the knowledge to treat and cure. They've invested many years of their time--late night experiments, long hours away from home, living on a small stipend and/or loans, and sometimes sacrificing their own health and sanity--to reach a point where they can begin to contribute to finding answers to society's problems and challenges. Joe Six-Pack is literally incapable of doing this--unless he invests and sacrifices the same way.

Beyond that, creating a drug or a medical device that can pass muster is not cheap and no one's going to do it for free. The public whining about how new drugs are sooooo expensive has to stop, too. Without the promise of profit, no one would have bothered to wade through the dozens, hundreds, and sometimes thousands of failed drugs to find one that not only works, but doesn't cause more harm than good while doing it. Yes, it might put the latest and greatest drugs out of some people's hands--but that's when we, as a society, need to find ways to make it work.

Last year NVICP vaccine court compensated a death from lupus

Research has shown that in some individuals, vaccination can trigger autoimmune conditions such as Guillain–Barré syndrome. McHale's onset of lupus began after an overseas trip, which generally necessitates a prior round of vaccinations.

In March 2011, the National Vaccine Injury Compensation Program paid the estate of Tambra Harris $475,000 because "petitioner alleged that she had suffered as a result of receiving a hepatitis B vaccination was systemic lupus erythematosus."

More research is needed to pre-screen individuals who may be susceptible to vaccine injuries. Tragic that government and media are so content to let this iatrogenic damage remain unstudied and untreated.

Thank you for the comment on the hepatitis B vaccine

I was a very healthy adult until receiving the hepatitis B vaccination series. I then developed gestational pemphigoid, pemphigus, components of SLE and mixed connective tissue disease, and now melanoma (even though I have always been diligent in protecting myself in the sun). I have been convinced it was related from the start, but always reassured it wasn't. I believe France was the first to ban the vaccination, and I hope that our country will follow with more research on this vaccination series as a trigger for autoimmune disease.

Sasha was a UMD classmate of my daughter, and my heartfelt condolences go out to her family, friends and classmates. I had hoped to read more about what specifically happened, but nearly all articles are about her father. My concern was that she might have been receiving IVIG and developed aseptic meningitis complications.

Comments made by Paula Berge

Dear Paula,
I read your comment about the Hepatitis B vaccine. You mentioned France banning it, which makes me think you have done some research on the subject. I do not have lupus but I have a compromised immune system because I had a liver transplant and I take Prograf anti rejection medicine.
My doctors are always after me to get a flu shot and I am curious if your know if that has posed a problem with people who are immunocompromised. I'll settle for your opinion if you haven't seen a study that relates to this. Thank you,
Michael Gabriel