A Fighter for Patient Safety

Preventing Unsafe Injection Practices with Dr. Evelyn McKnight

Contagious Conversations  /  Episode 19: A Fighter for Patient Safety

From personal tragedy to lifesaving crusade

When Dr. Evelyn McKnight was battling breast cancer in 2002, the last thing on her mind was hepatitis C. So when she and her husband Thomas learned she had contracted the virus from unsafe injection practices during her treatment, they were shocked. Now she's sharing the story of how she turned this tragic event into an ongoing campaign for patient safety.



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Below: Dr. Evelyn McKnight with her husband, Thomas, who together created the McKnight Family Fund for Patient Safety and the McKnight Prize for Healthcare Outbreak Heroes.





Claire Stinson: Hello, and welcome to Contagious Conversations. I'm your host, Claire Stinson. Every episode we'll hear from inspiring leaders and innovators who make the world healthier and safer for us all. Contagious Conversations is brought to you by the CDC Foundation, an independent nonprofit that builds partnerships to help CDC save and improve more lives.

Joining me today is Dr. Evelyn McKnight, a nationally recognized patient safety advocate and survivor of one of the largest viral outbreaks in American healthcare history. An audiologist and mother of three, Dr. McKnight was battling a recurrence of breast cancer in 2002 when she learned she had been infected with hepatitis C during her treatment. Dr. McKnight turned her own personal tragedy of being infected with hepatitis C into a crusade to save lives. In this episode, Dr. McKnight shares her story, which inspired her advocacy work with safe injection practices and the Evelyn and Thomas McKnight Family Fund for Patient Safety. Welcome, Dr. McKnight.

Evelyn McKnight: Thank you, Claire. I'm very honored and delighted to be here.

Claire Stinson: Thank you for being a part of this conversation and for sharing your story. Dr. McKnight, let's talk about your background a bit. Your medical background is as an audiologist. Can you share what drew you to that profession?

Evelyn McKnight: Well, I always knew that I wanted to be in a helping profession. I didn't know exactly how that was going to take shape. I went to a career fair in high school and was really drawn to the exhibit about speech and hearing professions, speech pathology and audiology. I started as a freshman in college in pre-med and found that organic chemistry was not my thing. In addition, I was also taking some classes in speech and hearing and really enjoyed the science of it as well as the aspect of helping others. So eventually, that led me to audiology and it was a good move for me.

It was a great career because it provided intellectual stimulation and the opportunity to help others and the opportunity to witness human behavior, how people coped with difficulty, how they overcame it or gave into it. And fortunately, I had the great, good fortune of spending a lot of my days with older people who had a lot of life wisdom to share, and they were very good about sharing all of their experiences and struggles throughout life. I mean, this was a generation that had gone through the depression. They'd gone through World War II. They'd seen Vietnam, they'd seen race riots.
They had seen a plethora of struggles for the whole world. So those people were really my mentors in courage and I still continue to draw on those stories. And that has been so helpful to me during this pandemic to think about those folks and what they went through and how can we live up to the great courage that they displayed during all of that. So it was really a good fit for me and I am very grateful for that time that I spent as an audiologist.

Claire Stinson: Well, that's wonderful. Thank you for sharing that. And it sounds like it's given you great perspective.

Evelyn McKnight: It has. I'm very grateful.

Claire Stinson: So Dr. McKnight, you are a breast cancer survivor and it was while you were battling a recurrence of breast cancer that you learned you had been infected with hepatitis C while receiving treatment. This inspired you to use your experience to help save lives. And today, you're a nationally recognized patient advocate. Tell me more about this journey.

Evelyn McKnight: It was a journey that I didn't set out for, but it was where I found myself. And what happened was that during treatment for breast cancer, we coincidentally learned that I had hepatitis C. I had no risk factors. There was no reason to have hepatitis C. So as time went on and as healthcare providers dug a little bit further into this, including my husband Tom who is a family physician, it was determined that nurses at the oncology clinic were reusing syringes during administration of chemo. So, what they would do would be draw blood from our ports, put that blood in lab collection vials, switch off the needle, but use that same plastic syringe to access a 1000cc saline bag to give us port flushes.

So, when one of those plastic syringes access that large saline bag, that blood contaminated that saline bag. A person with known hepatitis C came to the clinic and that blood then contaminated that saline bag with hepatitis C. And then in that way, 99 of us contracted hepatitis C. It was through an investigation by the CDC and the Nebraska Department of Health and Human Services that this all became known.

Claire Stinson: My goodness. That's so shocking.

Evelyn McKnight: Yes.

Claire Stinson: And you were already dealing with breast cancer, and then you got this additional information. What was it like to receive that diagnosis of hepatitis C?

Evelyn McKnight: Well, at the time, I was facing a stem cell rescue. I had stage three breast cancer. And at the time, it was determined that a stem cell rescue would be the course of treatment. That's a very arduous treatment. It's three weeks of intensive care. I was just about, I was actually ready to be admitted when we got this news. So, it was just putting one foot in front of the other and just dealing with the stem cell rescue and putting that hepatitis C on the back burner. Now, it was always sort of in the back of my mind and when I was released from the hospital and Tom, my husband, was able to return to his practice, that we started thinking about it and wondering about it and being overwhelmed by it.

Claire Stinson: Right. Well, it's certainly a really challenging experience, but it really has inspired you to turn that experience into helping saving lives. So in 2007, you and your husband, Thomas, formed the HONOReform Foundation with a mission to protect patients through safeguarding the medical injection process and to encourage healthcare providers to follow fundamental injection safety practices. How would you describe the climate at the time you started this work?

Evelyn McKnight: Well, at the time that we started this work, there had been outbreaks before us, we learned. Shockingly, we thought we were the only ones that had this kind of great misfortune, but there was concurrently a new outbreak in the Las Vegas area where healthcare providers were reusing syringes and multi-dose vials in an outpatient procedure clinic. And that was a very large outbreak. 60,000 Las Vegas residents got a letter from their health department saying, ‘Dear sir or madam, you have been potentially exposed to hepatitis C, hepatitis B or HIV through unsafe injection practices.’

So this was even greater impetus to us. And it really was, we had all of these experiences, but there was not really an identified leadership, a method, a channel of using those experiences and those stories to improve injection safety. So we partnered with the CDC Foundation with the CDC and other industry and healthcare providers and nonprofits and universities and health departments to form the safe injection practices coalition, which then form the leadership to move forward on injection safety in the United States and actually in the world.

Claire Stinson: Such an important goal. And there may be listeners out there that don't know that there are unsafe injection safety practices out there in America still today.

Evelyn McKnight: That's true. It's something that isn't always reported as well as there's so much other big news, huge news, out there so that sometimes it slips under the radar. But we still do see some outbreaks, especially in terms now of drug diversion, a healthcare and addicted healthcare provider can take, draw a vial of fentanyl or propofol from the anesthesia cart, perhaps go in the restroom, inject themselves, refill that with saline so that it isn't seen as being depleted and return it to the anesthesia cart. If that individual is infected with hepatitis C, then that vial is infected with hepatitis C.

Claire Stinson: Wow. So even more important that you are leading this work to encourage safe injection safety practices. So 13 years later, how would you assess the evolution of patient advocacy, both in terms of awareness and resources for patients?

Evelyn McKnight: Well, we are just delighted with the progress, with the amount of resources, with the amount of attention, with the amount of people who are firmly dedicated to injection safety. There is now the One & Only Campaign, which is a very robust campaign developed by the Safe Injection Practices Coalition and the CDC and the CDC Foundation. It can be accessed at cdc.gov/injectionsafety or oneandonlycampaign.org. And it has very robust materials for educating providers and patients about injection safety. It has position statements, it has journal articles.It has PowerPoint presentations. It has podcasts. It has videos. It is very, very robust and full with resources. There's also in about nine or 10 states, there are full-time employees of the health department that are injection safety specialists and all 50 states' health departments are members of this campaign. Many industry partners and university partners are really talking about injection safety. So, it is very heartening to see the groundswell of interest and advocacy for injection safety.

Claire Stinson: Absolutely. It's had such a real impact. So your story has really helped provide so many resources for so many people. That must make you feel really proud.

Evelyn McKnight: It does. It does. And at the same time humbled because I know that my story is one of many, many stories. I think that it was determined that there was about 200,000 people in the decade from 2010 to 2020 that got letters from their health department saying you have been potentially exposed to disease because of unsafe injection practices. So I know that there are many out there who are part of this whose stories are real and important. And I also know that there are many healthcare providers who have been strengthened and shocked by these stories and are doing their best to make sure that healthcare is safe for everybody.

Claire Stinson: Absolutely. It is surprising and shocking that we still see lapses in infection control practices even today. How often do we see these lapses in the United States overall?

Evelyn McKnight: Well, we know that healthcare in the United States is generally safe, but we know that we are human. And because we are human beings providing care to other human beings, there's going to be some glitches. There's going to be some times when things don't happen right. For example, I was inpatient in the hospital a couple of weeks ago, and the nurse came into my room. She was to start, she was a member of the IV team, and so she was to start my IV, and she pulled out of her cart a multi-dose vial and began to draw up that preparation in my room.

And my husband, Tom, was in the room and he says, ‘wait a minute, I got to stop you there. Is this a new vial?’ And she said, no, it has been accessed before. Has it been labeled? Well, no, it's not labeled. So he on his phone pulled up the One & Only Campaign and just with a couple of tap, tap, taps, showed her the guidance where it says that allocations are not to be drawn up in inpatient rooms. They're supposed to be drawn up in specified rooms, just for the mixture of chemotherapy and other kinds of injections. So, she immediately stopped. She got out a new vial just for me.
It went up the chain of the command. The safety director came to visit me in the room later that day and they immediately put out guidance to all of their teams and changed their buying practices so that there was only single dose vials. So, that was very heartwarming to me, and it shows the power of patients and how it is important for us to speak up for ourselves.

Claire Stinson: Right. And you were able to access those resources and implement those resources in real-time just a few weeks ago.

Evelyn McKnight: Yes. Yes. We just had our phones with us and with a couple of taps, there it was.

Claire Stinson: Well, I'm so glad you did. And it certainly sounds like we do need to be our own empowered patients sometimes.

Evelyn McKnight: Yes, that's true. We need to be empowered and we need to be an engaged member of our healthcare team. We're partners, all of us on that team are partners and every voice is important. We know that good communication prevents errors and saves lives. So, it's really important for everybody on the team to be communicating.

Claire Stinson: Absolutely, and to speak up if you feel the need. So, Dr. McKnight, can you tell us more about where these lapses might occur if you are getting treatment like chemotherapy or maybe having surgery?

Evelyn McKnight: Well, any place where patients are getting injections and healthcare providers are giving injections, those lapses can occur. So they can occur in outpatient settings, they can occur inpatient, ambulatory surgical centers, oncology clinics. Anywhere that there are injections, these unsafe practices can happen.

Claire Stinson: Absolutely. So, so important to check out those One & Only resources to really see the important facts and access those resources if needed.

Evelyn McKnight: Yes.

Claire Stinson: So Dr. McKnight, you helped to start the Safe Injection Practices Coalition with the Centers for Disease Control and Prevention and the CDC Foundation, which you touched on earlier. Can you tell me more about this work and the impact it has had on patient safety?

Evelyn McKnight: When we realized that there were outbreaks before us and outbreaks continuing to happen after our outbreaks, we were so fortunate to be able to meet with some folks at the CDC and the CDC Foundation, and talk about this need and through their leadership, we drew together a group of stakeholders who were passionate about injection safety. And from this came the Safe Injection Practices Coalition, and it's a broad range of stakeholders that include industry, it includes healthcare providers. It includes non-profits, it includes patient advocacy groups. It includes health departments, and this group has really worked hard together to support and develop materials for the One & Only Campaign. They continue to be a great resource and a great support, and we're so fortunate that we have this broad range of people who are interested and committed, passionate about injection safety.

Claire Stinson: Absolutely. And this coalition also highlighted the importance of collaboration in public health, which we're focused on at the CDC Foundation. As you reflect on the overall success of the coalition, who are some of the stakeholders that were engaged in this work?

Evelyn McKnight: Well, of course, forefront was the CDC and the CDC Foundation. I'm reluctant to name individual stakeholders because there are so many that I will overlook, but they were people from the industry that make syringes and make multi-dose vials and pharmaceuticals. They were organizations that are dedicated to serving professionals who are engaged in public health work. They were university, academic settings. They were patient advocacy groups who were advocating for patient safety. They were health departments and just many others who were committed to making sure that what happened to us in Nebraska didn't happen to other people.

Claire Stinson: Right. And it sounds like it was a true collaboration, so many different sectors that came together with one important goal.

Evelyn McKnight: That's exactly right. Everybody was working together. We were all equals. Everybody rolled up their sleeves and pitched in.

Claire Stinson: We'll be right back with Dr. Evelyn McKnight.

During this season of Contagious Conversations, we want to recognize all of the public health heroes who are working behind the scenes and on the frontlines during the COVID-19 pandemic and protecting us from many other health threats. Thank you for all that you do every day to keep us healthy and safe.

And now, back to our conversation with Dr. McKnight.

So Dr. McKnight, let's turn to talk about your new fund, the Evelyn and Thomas McKnight Family Fund for Patient Safety. Please tell us more about what you hope will be the impact of this fund.

Evelyn McKnight: Well, what we're looking for is to continue this work of the One & Only Campaign and support that work. We want to continue to provide funding for educational materials that raise awareness and highlight the work of the One & Only Campaign, and we will also be maintaining an annual award, the McKnight Prize for Healthcare Outbreak Heroes and this award honors and recognizes people who are doing important work to promote safe injection practices or the general broader area of patient safety.

Claire Stinson: So you mentioned the McKnight Prize for Healthcare Outbreak Heroes. Who is the first recipient?

Evelyn McKnight: The first recipient is Dr. Maureen Tierney, and she initiated and oversaw the investigation of an outbreak of E. coli related to a nationally distributed unapproved biologic product administered to patients seeking relief from arthritis and degenerative diseases. So she was honored in a virtual ceremony. She is currently at the Creighton University. She is now a Nebraskan, but I have to tell you, she was the unanimous recipient. She was awarded this unanimously from the committee, it's a national committee that selects the McKnight Prize. So it was just a happy coincidence that she's also a Nebraskan.

Claire Stinson: Well wonderful, and congratulations to her. We're very grateful that you helped establish this new fund and this new award at the CDC Foundation.

Evelyn McKnight: Thank you. It has been an honor. In 2018, after about 10 years of running the Hepatitis Outbreaks National Organization for Reform Foundation, or HONOReform, we found that we'd sort of worked ourselves out of a job. When we started there, we were the only ones educating, providing education to healthcare providers and patients on injection safety. But in those 10 years as we saw the work of the Safe Injection Practices Coalition, and the One & Only Campaign expand, there were many many people providing this kind of education.

So, because so many people were talking about it and because I was experiencing some health problems, we decided that we would close the Foundation and then use whatever funds were left over to begin an endowed fund, the McKnight Family Fund for Patient Safety at the CDC Foundation.

Claire Stinson: Well, we're very grateful and we certainly hope that it has impact for years to come. Dr. McKnight, do you think about how far you've come since 2002?

Evelyn McKnight: I do, with great personal reward and great pride in so many people, so many good people, so many heroes across the country who have just taken this on as a personal passion and have saved lives in the process. I feel so much gratitude to them because I know that without the support of so many good people, this effort would not be as successful as it is.

Claire Stinson: Well, thank you for sharing that. And you've probably met some really inspiring people along the way.

Evelyn McKnight: Many heroes, many, many good people.

Claire Stinson: So, for our listeners who may be tuning in today as a patient, what can we do to protect ourselves when we are having medical treatment?

Evelyn McKnight: Be informed; do your homework; use reliable sources from the internet; develop your list of questions; bring forward with you your healthcare history; bring an advocate with you. Someone who is another set of eyes and ears, someone who can ask the questions when you can't think of them, and then go forward and meet your healthcare team and become an equal partner, establish that culture within your team that you are an empowered patient, that you are an equal partner that you want to work together with them. And then, make sure that you ask your questions, understand the answers, speak up when you see something that you are uncomfortable with. And just in general, know that your voice is important and you have a say, and you need to be comfortable with the treatment options and how treatment is going forward.

Claire Stinson: Really, really important advice that especially that you're equal partners with your healthcare team. That's really important advice.

Evelyn McKnight: Yes, it is. For too long, we have operated under the assumption of, well, the doctor knows best. Well, the doctor doesn't know you as well as you know you. And so now that culture does not work and we know that medical error is reduced greatly when there is good communication among all members of the team. So it's important for all of us. We're all patients, we're all part of this big soup called patient safety, and so it's important for all of us to speak up, to be part of a team.

Claire Stinson: So Dr. McKnight, here's a question I often like to ask guests on this podcast. What advice do you have for the future health and public health leaders of America?

Evelyn McKnight: Well, first of all, I want to say, thank you. Thank you for being you. Thank you for doing the work that you're doing. Especially during this time, it must be so draining and taxing and at times, disheartening. But please know that a grateful nation looks to you for the science, for the guidance, for the care that you are giving. So from the bottom of our hearts, thank you so much. Please take courage, please hang in there with us because we need you more than ever. And on those days when you think that I can't do this any longer, please know that you are saving lives.

The number of lives that you're saving cannot be counted and the amount of human suffering that you are preventing is legion…it's infinite. So please stay with us, please continue to provide us your expertise and your guidance in how we're going to get through this difficult times to a place of better public health. Please also know that we respect science and we know that science is important, and we will again come to a place where your work is celebrated. Thank you again so much. And please, as time goes forward, please help develop policies that provide access to quality healthcare for all people, not just those people who can afford it.

Claire Stinson: That's really powerful. Thank you for sharing that. Dr. McKnight, it's been such an honor speaking with you today and thank you for sharing your story with us.

Evelyn McKnight: Thank you so much, Claire and thank you so much for the work that you're doing to provide these conversations to so many people.

Claire Stinson: Thanks for listening to Contagious Conversations produced by the CDC Foundation and available wherever you get your podcasts. Be sure to visit cdcfoundation.org/conversations for show notes and bonus content. And if you like what you just heard, please pass it along to your colleagues and friends, rate the show, leave a review and tell others. It helps us get the word out. Thanks again for tuning in and join us next time for another episode of Contagious Conversations.