Finally Found My New Normal

My mother, Judge Diaz and I after being officially sworn in.

I apologize for yet another lengthy absence from my blog. I’ve been diverting all my energy into a few big projects lately. Most notably studying for the Florida Bar Exam. If you know anything about the test, you have probably heard just how stressful it is! My last blog post was right after the exam. I needed a break from blogging.

I’m so excited to announce that I passed the bar exam and was sworn in on April 16th! It was a crazy morning, I barely slept the night before, Sjögren’s was causing a nasty flare, and I was nervous. When I saw I passed, I cried! It was great to be surrounded by friends, my professors and my family during the ceremony.

Since then, I have been busy establishing my new normal. I had the chance to chat with Marco Rubio and thank him for co-sponsoring the OPEN Act. He is enthusiastic about getting it passed, the next time I am in DC, we are going to make sure everyone is on the same page strategically to get it done.

As for my work- I continue to consult with pharmaceutical and biotech companies on various projects, ranging from patient advocacy plans to legislative strategy. I am also Of Counsel to the Lerman Law Firm. I am excited to be using my legal education to continue the pursuit of making the world a better place for rare disease patients.

I look forward to rebuilding my life after all of these great things, and continuing the push forward. Thank you for being a part of my journey.

Achievement Unlocked: Law Degree

I did it. 

On December 7th, I graduated from law school with a concentration in health law. Last week, I took the Florida Bar Exam. Life has been pretty hectic since I last blogged, but I am excited to get back into it.

In June, I was awarded a scholarship to Seton Hall School of Law’s Healthcare Compliance Certification Program. It was a fantastic week in New Jersey, really fine tuning my knowledge of federal compliance regulations. I was also alarmed at how these laws can negatively impact the rare disease community. Expect more on this topic soon.

In August, I was invited to attend a special meeting with the Venezuelan dissident community in Miami, which was being held by Senator Marco Rubio, Governor Rick Scott, and Vice President Pence.

In September I had a chance to chat with Allen West, a great supporter of the rare disease community.

In October, I was invited to speak at the World Congress Patient Advocacy Summit. My speech was on the 21st Century Cures Act, and the role patient advocacy played in forming the legislation.

Of course, while I was in Washington, DC I made sure to meet up with Congressman Bilirakis to continue working on the OPEN Act.

In December, I met with Corey Lewandowski and David Bossie. We had a chance to chat about the OPEN Act, President Trump’s support of the rare disease community and how we can continue to push for more reforms to benefit the 1 in 10 Americans with a rare disease.

In January, I took a study break to meet former federal judge Ashley Moody, who is running for Attorney General of Florida.

It’s been a busy few months, and now I am back to work, focusing on reforming healthcare regulations and proposing legislation to assist patients and industry meet the end goal of getting treatments to market.

 

 

The Truth About OPEN Act

I was blessed to be with Congressman Bilirakis this week, working on the OPEN Act.

Since the end of last year when the OPEN Act was removed from the 21st Century Cures bill, I have spent many sleepless nights trying to understand why Washington was not comprehending the critical need for repurposing drugs. We are now working to convince Democrats that the OPEN Act is not a handout for pharmaceutical companies, as I am living proof that repurposing an FDA approved drug works wonders. Continue reading

Tis The Season for Action!

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Kona wanted to make a special holiday appearance in honor of our call to action for the Senate over the 21st Century Cures initiative. I sincerely hope that when I arrive in DC in a few weeks, progress will have been made. There is no time to waste when 30 million Americans depend on Congress to take action.

My blog is a road map of my rare disease journey, starting last year when I decided to take a chance and use Rituxan off label. It is not approved for ITP patients. Why? Because we don’t have enough information and research on ITP to conduct a comprehensive clinical trial. One of my goals for 2016 is to change that. Through my research, I have been able to isolate a population of ITP patients who can and will benefit from use of the drug. Simply put, this drug is a life saver and the people who achieve remission from it enjoy a few years of a fairly normal life. There is absolutely no reason why this should be denied to people like myself.

Tomorrow is December 18th, which happens to be the one year anniversary of my remission. I truly believe this gift was bestowed upon me to give me a chance to fight for others. I have lost a few friends in the past year to ITP, it doesn’t get any easier and it makes me realize just how fortunate I am.

I’ve spent the last 365 building my new normal, now it is time to change medicine.

Dear Senate: You Should Care About the OPEN Act

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Allow me to introduce myself. My name is Candace Lerman and I’m a 28 year old rare disease patient. I lived 27 1/2 years as a happy and healthy person with a successful career, hobbies, lots of friends, the American dream. Then on May 1st, 2014 everything was taken from me. I was diagnosed with a rare blood disorder called Immune Thrombocytopenia (ITP). I had my whole life turned upside down because of it.

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My disease can be painful and debilitating. I lived in a bubble while the best doctors in the world at the University of Miami tried to bring my disease under control. After seeing that steroids wouldn’t work and were destroying my body, my doctor recommended something that seemed impossible. He told me about Rituxan, a drug that treats Non-Hodgkins Lymphoma patients, and he thought it could help me control ITP. I was shocked, I was beyond scared and I was worried about what “chemo” would do to my already frail body.

I had to pray a lot, research a lot, think A LOT. I took a leap of faith and decided to go through with the treatment. I started this blog and documented everything, I wanted people to see what my experience was like using an FDA approved drug, off label. When I was declared in remission, I was elated. Finally I could begin to rebuild my new normal as a rare disease patient. I no longer had to live within the confines of ITP. I no longer had to fear dying too soon. The treatments were easy to deal with, and after four weeks I was an entirely new person. I finally established my new identity as a Rare Disease Warrior.

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I traveled to DC for Rare Disease Week at the end of February and had the chance to meet with one of the sponsors of the OPEN Act, Congressman Bilirakis. I was moved to tears after telling him my story and our discussion of how repurposing FDA approved drugs for rare disease patients could save lives. I finally felt that all of the pain, the suffering, fear, heartache and sacrifices I made were going to contribute to a great cause. I don’t want anyone else with ITP or any other rare disease to experience the hopelessness I felt.

Shortly after my 28th birthday, before I ever knew I had another option, I contemplated killing myself. I’m not saying this to be dramatic, but I felt that there was no way out of the hell I was stuck in. I felt like I wouldn’t be able to live a normal life with the treatment options I had available. I wanted to go to law school, hang out with friends, spend time with my boyfriend, travel and experience all the wonderful things being 28 has to offer. I didn’t think I would have a chance to do any of it. I thought I would spend the rest of my life in and out of the hospital and my doctor’s office.

Rituxan has allowed me to be myself and I don’t see why other patients like me shouldn’t have the same opportunity I had. I am starting to worry about continued access to Rituxan once my remission ends. I have to change insurance plans at the end of the year, so since Rituxan is considered “off label”, I might not be able to use it again when my ITP comes back. This is why the OPEN Act is so important to me. I want to be able to continue living a normal life.

So Senators, I ask that you support the OPEN Act and work together with representatives in the House to get the 21st Century Cures Initiative on President Obama’s desk by the end of the year. I know it can be done, and patients like me cannot wait any longer. We need more treatments and cures, before it’s too late!

Op-ed on the OPEN ACT featuring ITP

I’m honored to have my story mentioned in Congressman Bilirakis’ op-ed piece which is on The Hill today. The 21st Century Cures bill passed the subcommittee by a verbal vote which is incredible!

The link to the article is here. Be sure to continue reaching out to your representatives and encouraging them to support the 21st Century Cures legislation!

The OPEN ACT is Part of 21st Century Cures!

Yesterday, we had an action day to gather support for HR 971, the OPEN ACT. I’m excited to share that it was a success! The OPEN ACT will now be a part of the 21st Century Cures initiative. I was on a conference call a few weeks ago and inquired about the possibility of the HR 971 being grouped in, but no one was completely sure of the outcome. I hoped that continuing to push for support for the bill would make it happen. After all, there is strength in numbers! Despite being really sick today, I am over the moon from this great news. However, our work isn’t finished yet!

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Why #Cures2015 Should Matter To You

Healthy me, October 2013

Healthy me, October 2013

All it took to radically change my life were five words: you have Immune Thrombocytopenia Purpura. I was four months shy of my 28th birthday. I had been enjoying a very successful career with the largest rental car company in the world. Life was good! Then ITP came into my life and destroyed everything. My job dumped me, I had friends disappear, my mental health suffered and I had to figure out what to do. How could I rebuild my life that I had just started? Why me? Why now? Continue reading

Rare Disease Week in DC

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Discussing the OPEN ACT with Congressman Bilirakis

I am so excited to share with everyone my trip to DC for Rare Disease Week. It was a wonderful opportunity to meet with other rare advocates as well as healthcare industry leaders and political figures to discuss important legislation. Personally, it was a life changing experience where I finally felt that everything I have gone through in the last 313 days can have a positive outcome. While my situation is unique and I have a rare disease, my decisions can be used to trigger the changes necessary to allow all rare patients a chance at a better life.

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