As a therapist, I often find myself congratulating clients for taking the first step as that is usually the most difficult. That first step might be making a phone call and asking about what resources are available for help or quite literally taking that first step into my office. So, too, do I congratulate the past contributors to our blog who have gone above and beyond to take that first step to share their stories. By speaking their truth, they have risked much, but were still undeterred.
You simply need to scroll back through the last few months and you will find many heroes who could no longer stay silent. Most recently, Anita Betrand shared her journey from addiction as a CRNA to that of an advocate speaking out so others can learn from her. Her struggle in and of itself was an arduous one, yet Anita chose to take that one next step to help educate so other healthcare workers finding themselves in a similar circumstance know there is a light at the end of the tunnel.
The North Dakota Outbreak: The Daughters of a Victim Speak Out, Call for Action
Tam Black and Jan Laudenschlager tell the heartbreaking story of how their father was infected with Hepatitis C while a resident at a long-term care facility in North Dakota.
Our Dad is one of the 44 victims of the Hepatitis C outbreak in North Dakota. The outbreak occurred at ManorCare, a long-term care/rehab facility in Minot. Dad spent six days at ManorCare in November of 2012 for physical therapy following a minor stroke. During his short stay, he had two blood draws and a tuberculosis test. After he returned home, he never got back the energy and strength levels he had prior to the stroke. We now attribute this to the Hepatitis C infection he caught just days after his stroke.
In July of 2013, he tested positive for Hepatitis C. It was a complete shock, and it still hasn’t really sunk in. The stigma of the infection was hard for both of our parents. They didn’t want anyone to know and were worried about having anyone over to their home, especially their grandchildren. We can’t begin to imagine the stress our Dad was living with then and now, not knowing what is to come.
The State Health Department was in charge of investigating the outbreak, and we waited patiently for their findings. In December of 2013, they concluded that the exact method of transmission was not identifiable and suggested that it could be associated with phlebotomy, podiatry, or nail care. We found this unacceptable!
One night, Jan was searching the internet for information on Hepatitis C and came across the HONOReform website. She emailed a short message explaining the situation and within 20 minutes received a phone call from Steve Langan.
No one in our community was paying attention to what happened at ManorCare, so with guidance from HONOReform, we decided to let the public know about the outbreak. It took great courage for both of our parents to let us take their story to the media in hopes of getting some answers. With Steve and Evelyn’s help, we were able to get our local news to televise a series of short features about the outbreak.
We wish Dad could start the oral medications he needs to combat the infection, hoping that it would help with his fatigue and weakness. He was denied coverage of the medications by the Veterans Administration and cannot afford them otherwise. For the 12-week regime of two pills a day, the cost is $160,000.
Mom and Dad are still taking things day-by-day. A support group for the victims and their family members has slowly been forming, which will hopefully make the task ahead easier – because we will continue to fight for answers. Our parents, along with other victims and their families, are owed at least that much.
Simply put, these 44 victims deserve an explanation. They should not be forgotten.
We send our best wishes in a special way today to our friends in Minot, North Dakota. Minot is the location of a healthcare-assoicated outbreak of Hepatitis C in which 44 residents of a nursing home were infected. Public health officials continue to investigate, but the exact cause is a mystery at this time. We send our best wishes for the good health and comfort for all the victims and their families.
I well remember those days of questions and confusion. When I found out I had Hepatitis C in early 2002, my husband and I were so stigmatized by the diagnosis that we told no one. We were alone in our worry and puzzlement. It wasn’t until several years later, after the public health investigation and discovery of facts through litigation, that we understood the cause and magnitude of the Nebraska Hepatitis C outbreak. The community was shocked that 99 people had been infected through re-use of syringes during chemotherapy at our local oncology clinic.
Once I learned that we had contracted this deadly disease through healthcare services, I let go of my feelings of stigma. Having Hepatitis C caused many difficult emotions, but shame was not one of them. I was frightened, confused and angry. I mourned the loss of good health, peace of mind and confidence in our healthcare system. I was overwhelmed with the amount of new information I had to process and the decisions I had to make regarding my health, my family’s welfare, my finances, and possible legal recourse.
Members of our community hosted several information sessions to address these questions. Some of us formed an informal support group. We learned to cope in the years following the Nebraska outbreak. I believe that the people of the North Dakota outbreak will as well. And we want to help you learn to cope.
At HONOReform, our primary aim is the elimination of outbreaks caused by lack of adherence to national injection safety standards. But, despite robust national awareness and advocacy for injection safety, outbreaks continue to occur. We offer our support to the people who are affected by outbreaks. We are glad for the opportunity—which is a privilege and at the center of our mission—to help support patients and communities as they learn to cope with the many consequences of an outbreak.
Steve Langan, executive director of HONOReform, is in Minot today, Monday, April 21. He would like to meet with Hepatitis C outbreak victims and family members to determine their needs and goals – and to see how HONOReform can help.
He will be meeting with victims/family members at the Hyatt House, which is located in north Minot at the junction of the 83 Bypass & 21st Avenue NW (2301 Landmark Drive). Steve will be available from 11-1 and 4-6 in the Hyatt’s gathering room (take a right after you enter the building and it is just a few steps down the hall). For those who cannot see Steve at Hyatt House, it is possible to schedule an appointment for him to come to them (between 1 and 4 pm and after 6 pm). Steve’s direct phone number is 402.659.6343 and his email address is steve@www.HONOReform.org. We encourage everyone to contact him anytime.
HONOReform Thanks Journalists for Helping Educate Communities on the Importance of Injection Safety
We salute and commend our colleagues in the media—journalists, bloggers, hosts of television and radio programs—for their thorough support over the years for the need for injection safety. The patient notifications and confirmed outbreaks that move HONOReform and our many partners to take action have, sadly, become fairly regular occurrences. For us.
But in communities that are affected by a patient notification or a tragic outbreak caused by unsafe injection practices, it is brand new territory. These incidents defy credulity. How could this happen? This couldn’t happen here! This is a developing countries problem!
These are some of the comments we regularly hear. We understand. We have been there ourselves.
Thanks to the excellent engaged Safe Injection Practices Coalition, which is led by the Centers for Disease Control and Prevention, a variety of excellent materials are in place. The One and Only Campaign is an excellent resource—and one that we share straightaway with members of the media, whenever we are involved in a discussion on injection safety.
We encourage you to review the One and Only Campaign Resources: http://www.oneandonlycampaign.org/campaign_resources
and, if you are a healthcare provider, put these valuable materials in place in your institution.
On December 2, 2013, our executive director, Steve Langan, wrote a blog piece titled “HONOResponse: Why the North Dakota investigation is Representative.” We had just learned of this incident; we were trying our best to gather all the facts…and determine how best we could take actions to support victims and the overall community.
Thanks in part to the journalists in the community, including Jim Olson of KXMC, more of the facts of this outbreak, from which 44 North Dakotans have been infected with viral hepatitis, have become known. And there was a recent community meeting, during which family and community members came together to support one another—and consider ways to work together going forward.
It is our pleasure to share links to the recent KXMC stories:
“I am grateful to the many journalists who have taken time to understand our mission, and embrace it,” said Evelyn McKnight. “I also want to commend patient and family advocates, including Jan Laudenschlager and Tam Black of North Dakota, who regularly share their story. These powerful stories need to be heard, and they drive policy makers, public health leaders and healthcare workers to make necessary changes.”
(On an upcoming HONOReform blog, Jan and Tam will tell their story.)
HONOReform will be present in Minot on Monday, April 21, to meet with patients, their family members and members of the community. For more information contact Steve Langan, 402.659.6343 or steve@www.HONOReform.org.
Thank you for doing all you can to prevent unsafe injection practices.