Driving under the dark and poverty-stricken bridges in Austin, Andrea Sloan never hesitated to help the homeless man who is shaking from the cold of another night without a blanket. She has always gone out of her way to show compassion and care to anyone in need, Karen Sloan said about her daughter Andrea.
For the last seven years Andrea has been fighting for her life. Not only does she have a rare form of ovarian cancer she is fighting for medicine that could save her life.
Both Andrea’s parents work at the University. Dr. John Sloan, clinical associate professor and Dr. Karen Sloan, associate professor of English, have stood by Andrea’s side throughout her battle with cancer.
Andrea has always had a free and independent spirit about her.
“When Andrea was four-years-old she decided she had two possible career paths. One was a waitress and the other was an attorney,” John said.
Andrea, 45, now spends her time helping others. She is an attorney for the Texas Advocacy project. The project is a program that helps give legal advice and services to victims of domestic violence, sexual assault and family violence, according to www. texasadvocacyproject.org.
“I could tell you hundreds and hundreds of stories that nobody knows except just intimate people. She’ll do things and it’s not like she talks about them,” John said. “She does stuff and lets it land where it does…she’s about doing it and moving on.”
Seven years ago, Andrea had not been feeling herself and after six months of trying to fight off the pain, she made a phone call to her mother. Karen drove to Austin to bring Andrea to Tyler to see a physician. Andrea thought it was her gallbladder giving her issues, Karen said.
“I remember being in the room with her and the ultrasound was supposed to take 15 minutes and it went on and on and on…and we could tell something was not good,” Karen said. “Andrea got a call later that night and the hospital confirmed that it was not her gallbladder and they were going to need to do a CT scan to be sure.”
The entire weekend the Sloan’s waited not knowing how their lives were about to change.
“They did a CT scan and then the doctor called us all in and just looked at us and said it’s ovarian cancer,” Karen said. “Andrea doesn’t remember anything about that day…she says she has no recollection of sitting down and having the meeting. It was just such a shock.”
At age 37, Andrea was diagnosed with a rare Stage 3C ovarian cancer. Andrea had been very healthy up to this point. She was a vegetarian, non-smoker, non-drinker and was training to run a half-marathon.
“I was devastated and numb when I heard the news,” John said. “I was heartbroken because right away we knew it was 3C and the odds of surviving cancer at that stage is very slim.”
When Andrea was first diagnosed she had the traditional chemotherapy treatment. This was followed up by six treatments of infusions where she had to be in the hospital once a week for at least 24 hours.
All of the treatments have taken serious tolls on Andrea’s body over the past few years. The radiation treatment has affected her voice; she has neuropathy causing numbness in both of her feet and has problems eating because her esophagus has been damaged.
A very small percentage of ovarian cancer patients make it to five years, according to the American Cancer Society. Andrea has beaten the odds and is a seven-year survivor.
Recently, Andrea received the news that the ovarian cancer had spread to her lymph nodes.
Andrea’s physicians at MD Anderson in Houston introduced her to a drug, BMN673, the only one of its kind that could help her. BMN 673 is an experimental drug still undergoing research. It aims to help ovarian and breast cancer patients who have the mutated gene BRAC, which Andrea has.
According to the BioMarin website, researchers found that in phase one and two of the clinical trials BMN 673 showed promising results.
“We are encouraged by this early stage data on BMN 673, including the safety profile and substantial anti-tumor activity,” Hank Fuchs, Chief Medical Officer of BioMarin said in a BioMarin press release.
Phase three of the trial for BRCA mutation breast cancer is underway. The trial will not test ovarian cancer patients.
“They believe this drug could help and it’s right there in the hospital where Andrea is undergoing treatment and [is] being administered to patients in the next room,” John said.
In order for Andrea to be able to use BMN 673 it would be under the terms of the Expanded Access Act. The act, commonly known as compassionate use, gives a patient the Food and Drug Administration’s approval of using an investigational drug outside of a clinical trial, according to fda.gov.
The patient must have a serious life threatening condition that cannot be otherwise treated. The patient’s physician must consent to having exhausted all other possible treatments and confirm that the risk of taking the medication is not greater than the risk from the disease.
Although the Expanded Access Act allows patients to use the investigational drug outside of the clinical trial, the act does not require the companies producing the drug to make the drug available or to make a drug specifically for the patient in need.
John said his daughter is a fighter by nature. Andrea’s doctor told her about the drug and that it would be hard to get. That did not stop Andrea from fighting for the drug that could save her life.
“She’s very sick. She needs the drug or she’s not going to make it. So she wasn’t going to just passively take ‘we don’t have a compassionate use policy’. She wasn’t going to take that lying down,” John said.
Andrea’s doctors have confirmed with BioMarin that there are no open and recruiting clinical trials for which she is eligible.
“Cancer is an epidemic, and it doesn’t discriminate,” Andrea said. For this reason, we need BioMarin to adopt a meaningful compassionate use policy so that it is there to help in the rare instances when patients have no other options.”
Andrea has amassed an army of supporters. Many she has never even met. Her story resonates with cancer survivors and anyone who knows or has known someone with cancer.
Karen said, Andrea had no intention of this going public. A family friend, Carol Carter, unknowingly started the change.org petition, which now has just over 140,000 signatures, in just four weeks.
“It felt like an answer to prayer because I wasn’t sure at first how I could help, just that I wanted to.” Carter said.
The petition will be sent to BioMarin after it gains 150,000 signatures. A Facebook page known as Andi’s Army has more than 12,000 supporters and the support of politicians and celebrities who include Wynonna Judd, Kathy Bates, Rosie O’ Donnell Mia Farrow, and Newt Gingrich.
BioMarin still has not directly spoken with Andrea as of September 20,2013 and when reaching out to them multiple times they were unavailable for contact.
Debra Charlesworth director of corporate communications for BioMarin responded via email the company’s stance on expanded access.
“We must ensure that our position treats all patients fairly. Thus, our consideration is not just about one patient, but is about what is the appropriate policy for all patients with similar circumstances,” BioMarin said.
They added that, “After only treating less than 30 patients, it would be unethical and reckless to provide end-stage refractory ovarian cancer patients outside a clinical trial with BMN 673 at this early stage of development.”
Karen said that the support for Andrea has been a blessing and privilege because it’s allowing Andrea to advocate for people in similar positions as her.
“I’m Christian so I really think God puts things together…and people who are not Andreas’s friends, like journalists, say ‘we’ve never seen anything like this before,’” Karen said.
The news of Andrea’s cancer changed the Sloan’s forever but John said there have been really positive things too.
“We are a family of believers and I think in terms of our faith, it has certainly enriched our faith. It has almost renewed my faith in people,” John said. There have been so many that have reached out in a caring loving way to us.”
The family is looking forward and continuing to hope that BioMarin will allow Andrea to have access to BMN 673.
“What I would hope for is that she would get to a place where the first thought in the morning isn’t ‘I have ovarian cancer’ and the last thought before she goes to bed at night isn’t ‘I have ovarian cancer’, Karen said. “I’m the person with the gene and if I had not had the gene Andrea would not have been suffering so it’s tough.”
Karen said she eventually has to leave it to God and no matter what BioMarin choses she knows Andrea is going to make a difference.
“We’re grateful for every day we have with her. We just want more,” John said.
Andrea’s petition for BioMarin is available at change.org/andisarmy and interested supports can follow Andi’s Army on Facebook.
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