Patient perspectives: Tiffany Peterson
Rebecca Aris interviews Tiffany Peterson
pharmaphorum interviews vocal e-patient Tiffany Peterson on her blog, Tiffany and Lupus, and how pharma can better support patients such as her.
Frustrated with the lack of information she received after receiving her diagnosis of Lupus, Tiffany Peterson didn’t want other patients to have the same experience as her. She decided to set up her blog, Tiffany and Lupus, to offers a means of support to, and a way to communicate with, like-minded patients.
Tiffany shares here her experience of being a lupus patient, how she has benefitted by connecting with other patients through social media and how pharma can better support patients such as her.
RA: Tiffany, thank you for taking part in this interview, please could you start by explaining your experience as a patient?
TP: Approximately two years before I was diagnosed I was undertaking a large course load at Lehman College for biology while also working full time.
In the years that followed my health began to gradually decline but I didn’t really know how serious things were because the symptoms were things that could be dismissed, such as fevers. I had a lot of joint pain and at one point I thought it was arthritis.
One day I tried to get up out of the bed and wasn’t able to. When I tried to raise my head the pain was beyond excruciating, I couldn’t walk for about two months. My GP sent me to a specialist after discovering rheumatoid factors in my blood work. I was diagnosed a month later in February of 2010 with SLE, Systemic Lupus Erythematosus.
RA: What then later inspired you to begin your blog Tiffany and Lupus and what sort of things do you blog about?
TP: I began my blog shortly after I was diagnosed with Lupus. I wasn’t given much information with my diagnosis from my rheumatologist at the time.
It was a really frustrating time for me because I expected more from my healthcare provider, I wanted them to give me a better outlook on what I could look forward to in the months to come and where I could go for positive support and community.
I started to look online, I was searching for Lupus information on Google, Facebook and even on Twitter.
“It was a really frustrating time for me because I expected more from my healthcare provider…”
I came across a lot of individuals who were talking about lupus, but there weren’t many positive sources for information online. I felt like there was a huge void which sparked cherished words of wisdom from my mother, “If you see something missing or wrong in the world and you’re not effectively trying to fix it, you then become part of the problem.”
I decided to get online and share my healthcare journey – what I like to call ‘From Lupus to living’, because it’s everything I’ve learned, and learning still on my journey to wellness. I’ve come a long way from diagnosis.
Two months of being unable to walk was beyond frustrating. It was soul-crushing, full of despair and void of hope. I made a promise to myself that if I was able to become mobile again I would make sure that every single step I took made a difference for all those other individuals out there living with Lupus. I didn’t want anyone else to have the experience of leaving their doctor’s office without having any means of support, communication or community with anyone else like themselves.
RA: What benefits have you found from using social media as a patient?
TP: The greatest benefits I’ve discovered using social media as a patient has truly been finding positive community as well as gaining vital knowledge, not only on my specific condition but on overall general health. Also, receiving support, not only from friends and family, but from patients, caregivers and healthcare professionals.
There’s a sense of empowerment that comes from educating one’s self on your health. Social media has been a big tool for connecting with all of these people in the world living with Lupus. It helps to understand that you’re not alone, because at the time of diagnosis it often feels like that.
RA: What do you consider to be the biggest challenge for a patient who is newly diagnosed with Lupus?
TP: Acceptance is one of the biggest challenges for a newly diagnosed Lupus patient. It’s extremely difficult to leave the land of denial and self-pity. Being diagnosed with a chronic disease, especially when there’s no cure, often leads to depression and feelings of isolation and that’s another reason why social media has been such a great asset in providing positive support in the community for those with Lupus when they’re not really finding that in their immediate environment. It’s a way for us to connect with each other no matter where we are globally. We can still feel like we always have that community and support system when we need it most.
“The greatest benefits I’ve discovered using social media as a patient has truly been finding a community…”
RA: What involvement have you had with pharma?
TP: My first involvement with pharma was on television during late night infomercials. The ones with smiling people wandering across the beach, talking about the latest drug they tried and how life is so much better now. Unfortunately, I’ve also seen drug reps talk to my physician’s receptionist…and wondered afterwards if this was the reason I was offered drug samples in conclusion to my visit.
A lot of those experiences left me with a negative perspective of pharma. Every pharmaceutical company is not the same but when you see the ads and have experiences such as reps in your office, it leaves a bad taste.
On a much better note, I recently had the opportunity to meet with pharma and it was quite a refreshing experience. It gave me hope for the future of pharma and it made the possibility of pharma becoming more transparent and patient-centred a bit more tangible. I have a new outlook at certain aspects of pharma, I don’t feel like they’re all bad apples! If they’re willing to reach out and engage with patient thought leaders there’s a lot of positive potential for them.
RA: How do you think pharma could better interact with patients?
TP: By providing patients with all the necessary information, prior to making important decisions especially regarding medications and clinical trials.
It often seems like when it comes to treating chronic diseases, therapy options are severely limited. The same drugs have been around for ages. Whenever something new emerges, especially for those patients who are not responding to prior treatments, we want to try these new things and we want to know what’s going on.
It would be great if pharma would finally open up and provide us with the necessary information so we can feel like we’re making informed decisions that would be beneficial to our health. This serious lack of information often feels like they’re hiding something. The key to trust is transparency and open communication. There are no excuses!
I also think that there should be a patient advisory board for each pharmaceutical company. I think it would be truly effective in screening pharmaceutical ads before they were released to the public. When I talk about a pharma ad I see on television, the response I get back from patients is so overwhelming. A lot of patients just really do not agree with the pharmaceutical portrayal of these medications.
There are so many ways for pharma to be more patient-centered. I really think it’s all about asking the patient what they’d like from pharma.
I want to feel like your first priority is the lives of your consumers before the financial gains that come from them.
“Acceptance is one of the biggest challenges for a newly diagnosed Lupus patient.”
RA: What do you consider to be the biggest unmet needs of patients with Lupus and how do you think pharma could help to better meet these needs?
TP: The one that sticks out to me most is the strong need for vital information and / or webinars, programs and support groups. It’s really important for this content to be online because Lupus is a disease that can be really debilitating for the people living with it. So many patients can’t physically come to informational seminars, programs and support groups but they can log in from their computers. A lot of these programmes would help assist them with daily coping and positive living.
Pharma could also help assist by funding unbiased programming and informational seminars to increase patients literacy on their illness and it also would be nice to know what future drugs are in development.
A huge deficit in pharma is the lack of patient involvement. I speak to so many patient advocates that have these amazing ideas and it’s always great to crowd source ideas whenever you’re facing an issue. You never know what can come out of it. There’s no reason for pharma to fear patient engagement. For most engaged patient thought leaders there are no hidden agenda, we truly wish to provide better outcomes for overall patient safety. Our bottom line is saving patient lives.
RA: Tiffany, thank you very much for your time and your insights.
For more information on lupus please see:
About the interviewee:
Tiffany is currently a lupus ePatient advocate sharing her experience on life while living with lupus at TiffanyAndLupus and is the founder / community manager of Friends Against Lupus, an informative community of lupus patients, caregivers, and supporters. She has been an ambassador for the S.L.E. Lupus Foundation for over two years and is currently Chair of their Awareness Committee.
She has received:
“Top Health Blogger Award” from Wellsphere in the Lupus Community.
“Best Reflection Award” from Wego Health
“Top Fundraising Award” from The Lupus Foundation of America in 2010 and 2011
If you’d like to get to know her better, don’t be bashful! Follow her on Twitter at @TiffanyAndLupus and join the conversation!
Should pharma companies have a patient advisory board?