Wednesday, May 27, 2015

GSK Lupus Summit: Lupus Bloggers Unite...with patient friendly GSK Big Pharma!

#GSKsummit on Lupus @shanelleG @LeslieRott @LAlupuslady @LupusAdventurer @cmswrites @TiffanyAndLupus @marlajan @despitelupus 

About two weeks ago, I had the pleasure of attending a lupus blogger summit in downtown Philadelphia. Hosted by GlaxoSmithKline, the makers of Benlysta, the #GSK Summit brought together a handful of lupus bloggers from across the nation, in order to share and discuss the strides GSK is making in the land of lupus, create awareness, and to meet others who are equally as passionate about advocating for lupus! 

To say that the event was inspiring is an understatement. It was thrilling to be surrounded by patient advocates, like myself, who had so much to say about lupus and living well. And to have been invited by GSK, a pharma company, to talk about lupus, what's being done, and what can be done in the future to improve the lives of lupus patients was beyond fabulous!

We had a chance to meet and talk with the key players of GSK's immunology team, learn about the results of a recent SLE survey, conducted by Gfk (Growth for Knowledge), and flip through the materials GSK has created to assist patients in managing their disease. Their website, USinLupus, deserves a visit. I've blogged about their site and materials before, but their newest checklists and reminders can assist anyone heading to their next doctor's appointment. Check them out here and here.

Below you'll find the infographic showing the results of the SLE survey mentioned above. One of the primary findings of the survey was that SLE patients have difficulty describing and communicating their symptoms to their physicians, which results in a gap between physician understanding of the full impact the disease has on patients. I'd say we patients find difficulty for many reasons, several of which I mention in my book and in my lupus workshop, Listen Up, Doc! It's not easy, and the fact that GSK acted upon these findings, and created materials to try and bridge that gap is commendable.

Another take away from the summit was the introduction to the other lupus bloggers. Many of us have had the opportunity to virtually "connect", but to be seated around a conference room table together, united in purpose, was something really special. Be sure to check out the blogs of the lupus folks who attended, and check them out on twitter. Some tweet more than blog, others blog more than tweet. Either way, they have some great things to say about lupus!

#GSKsummit on Lupus @shanelleG @LeslieRott @LAlupuslady @LupusAdventurer @cmswrites @TiffanyAndLupus @marlajan @despitelupus

And the blogs;
Lupus Adventurer, Lupus Colorado BlogLupus ChickGetting Closer to Myself, Tiffany and Lupus, LA Lupus Lady, LuckFupus, Shanelle Gabriel, and Queen of Spain.

Many thanks goes to #GSKSummit for hosting. The GSK folks who participated were top notch - so enthusiastic, gracious, and hospitable. I couldn't have asked for a more open and honest group of people with whom to share an afternoon! Please note that GSK provided for my travel and expenses in conjunction with the summit, but this post is all me!

Tuesday, May 26, 2015

GSK Lupus Summit: "L" is for Lupus!

A teaser for tomorrow's blog post...the lupus attendees of the #GSK Summit in Philadelphia earlier this month. You've never heard lupus discussed with such passion before! Thanks, GSK for bringing us together! 

Monday, May 25, 2015

The Pillbags do Memorial Day!

A little red, white and blue to honor those who serve our country. Thank you for all you do!

Wednesday, May 20, 2015

The Lupus Research Study - Pfizer, LRI, and 23andMe. Exploring the role of genetics and lupus!

It's been survey central here at Despite Lupus headquarters!

I've recently participated in several lupus surveys, one of which led to a video interview for a study about photosensitivity and lupus, and another which prompted me to join a lupus research study to help better understand genetics and lupus. I had planned to simply pass along the genetics study information in a post, but I thought I needed to know what was involved before recommended it. In doing so, I got hooked! So now I'm doing the study, and would welcome some company!

Image result for 23andme lupusThe study is a joint effort between Pfizer, the Lupus Research Institute (LRI), and 23andMe, the leading personal genetics company.

Here's 23 andMe's official launch statement:

The company is [officially] launching The Lupus Research Study in collaboration with Pfizer and the Lupus Research Institute to enroll 5,000 individuals with lupus for a study to better understand the underlying genetic causes of lupus such as the onset, progression, severity and response to treatments for lupus.  

Genetics has started to play an increasingly important role in medicine to understand disease characteristics and to develop new medicines. With your participation, we could provide insight as to why some people are more likely to get lupus, what triggers the onset of symptoms and why people respond differently to treatment options and drugs.

We want to find a better way to treat lupus through genetics. By partnering with Pfizer (a pharmaceutical company developing drugs to treat lupus) on this study, we will work together to learn how your genes and your environment could play role in lupus drug treatment, and how they relate to lupus risk and progression. This will be the single largest genetics study of lupus anywhere in the world.

Our research objective is to understand the genetic associations found between lupus patients' DNA and their disease, and apply this understanding to Pfizer's drug development efforts.

Here's all of the information you need, and the initial requirements are as follows:

In order to participate in the first study within the lupus community, you must meet all of the following criteria:
  1. You've been diagnosed with lupus by a qualified physician.
  2. You consent to have 23andMe (via a partner) contact your physician to obtain your medical records.
  3. You're willing to submit a saliva sample for DNA testing and complete online surveys related to your condition.
  4. You are at least 6 years old (minors under 18 require parental consent to enroll).
  5. You have access to the Internet.
  6. You reside in the United States.

You'll then be asked to answer some additional questions to determine if you're eligible to participate. The study itself will require an hour or two of your time, and includes a saliva test (an idea to which I'm warming up!), and some surveys. Check out their website here, and you can also read an article about the study.

Image result for 23andme lupus

Monday, May 18, 2015

Prescription Drug Savings: Check out these websites

A few months ago, I posted about the scarcity of Plaquenil, causing a price hike in our beloved lupus staple drug. I've had great feedback from many of you sharing your experiences - know that we are all learning from your comments.

In fact, several of you found such valuable information online about ways to save money on our prescriptions, I thought I'd pass along. (Thanks in advance to those of you who forwarded the information to me!)

According to the LFA's KNOW LUPUS game I mentioned in an earlier post, lupus patients take an average of 8 prescription medications to manage their disease. I believe it - I've been on that many, plus, plus, plus, and the costs of the prescriptions have always been a consideration.

So here are the cost-saving tips, some of which I hope will help save you a few bucks:

1) This prescription savings site is great! You put in the name of the prescription you want to fill, specify your location, and a list of pharmacies and their most competitive pricing come up in the form of a coupon. The coupons offered range in value, but you simply print out the coupon, or download it on your mobile phone, and take it to your pharmacist. I even think they price match! I used it for a new prescription I just filled, and while I only saved $3, it was still worth it. I literally searched for it on my phone while I was checking out at the register, and was able to redeem it right then!

Here's a great video explaining how GOODRx works. I'm also going to see if it works for Darwin's Anti-Inflammatory, and Bernadette's EpiPen. I can't make any promises, but it's worth a shot!

2) Pharmacy's Secret Savings: Two separate readers wrote in about this, and I've personally experienced it myself, so I'm going to mention it. But again, no guarantees here! Apparently, many pharmacies receive singular coupons or extra savings from various drug companies to offset the cost of medications. I remember filling Bernadette's Epi-Pen Jr. for the first time, and having a discount card from the prescribing doctor that saved $100. (It was still almost $200!) But the pharmacy had the same card when I went to fill it, so it never hurts to ask if there's any sort of discount card or coupon that could be applied to reduce the cost. Just be sure to thank your pharmacist either way. I used to bring my pharmacist cookies, which seem to make for very speedy refills. :) 

3) The LFA suggested this site, where you can take advantage of Needy Meds' drug discount card. In fact, if you google "drug discount card", a slew of options come up. If you can give it 20 minutes, I bet you'll be able to find some savings. The LFA also suggested checking their website for updates on the plaquenil issue. Since their press release was the reason I posted about the price hike to begin with, they are most definitely aware of the problem, and are investigating the causes.

In the meantime, hang in there, plaquenil users. Normalcy is bound to return soon! 

Friday, May 15, 2015

Upcoming Lupus Chat - Hospital for Special Surgery - Tuesday, 5/19/2015

I love the lupus folks at Hospital for Special Surgery! I led a lupus workshop at HSS several years years ago, and would highly recommend any event hosted by HSS. They get the right people involved so you get the right answers. I hope you get a chance to participate in this upcoming Facebook Chat!

Friday, May 8, 2015

Healthline's Best Lupus Blogs of 2015 - thank you, thank you!

As I said on Wednesday, April was a busy month. I barely had time to blog, what with the events I outlined in my last post. Add to that a great vacation at the beginning of the April to Sanibel, Florida (which inspired a new pillbag design to be unveiled in a day or two!), and my work at Despite Lupus had to take a back seat.

That's why I was so touched to find out this week that Despite Lupus was chosen as Healthline's Best Lupus Blogs of 2015. I'm so honored to be included, and I'm in such good company, too - click here to see all of the great lupus blogs featured. Your comments, emails, tweets, and updates are what keep me going, so know that every time I share, you're welcome to share, too. I love the feedback!


lupus best blogs badge
I'll leave you with this fun little video the folks at Alliance for Lupus Research came up with to briefly explain what lupus is, and how it attacks the body. Watch and learn from Mac the Molecule!