Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Cholangiocarcinoma FoundationAfter brushing off the symptoms of shoulder pain, fatigue, and GI issues as part of my career as a paramedic, I eventually scheduled an appointment with my primary care physician in 2009 when I suspected that I had gallbladder stones. The ultrasound revealed that I had a grapefruit-sized tumor on my liver. Despite having no risk factors or family history of liver disease, the liver resection, which removed two-thirds of my liver, confirmed that I had intrahepatic cholangiocarcinoma. Three months after the resection, my cancer came back, and I knew that with the limited treatment options for this disease, the only way to beat it was by participating in a clinical trial, which I credit the persistence of my oncologist for finding. However, because my health insurance did not cover the standard of care that went into participating in the clinical trial, I was only left with the option of undergoing palliative treatment, causing tinnitus and neuropathy amongst other side effects, which drastically lowered my quality of life. The barrier that I faced with the lack of coverage from my health insurance paved my path to advocacy. I, along with other patients from Montana, traveled to the Capitol and shared our stories. This led to the passing of a law that ensured that health insurance companies in Montana would have to cover the costs for cancer patients who wanted to participate in clinical trials. While the results of this law were not quick enough for my benefit, I knew that it would at least help others down the road. Fortunately, through my own research, I came across a federally funded clinical trial that was being conducted by the National Cancer Institute; even though this clinical trial was not specific to cholangiocarcinoma, I was adamant about attempting to enroll in it. Soon enough, I became the ninth person to enter into the trial, the first cholangiocarcinoma patient in the trial, and the first to have a response. This clinical trial and the perpetual support from my husband and children are the reasons why I am here, twelve years later. 

My cancer journey has not only changed my life, but my family’s – their perception on life, what is important, and their ability to value time. My children have become involved in advocacy, which bleeds into the family whether they want it or not. Through it all, I learned that it is important to be your own advocate. This is especially true for those who do not have access to care – to health experts or to clinical trials – due to financial or geographic barriers. Everyone deserves equal access, but change is a process; nothing moves fast in the cancer world, and I wish we could make things move faster. However, there is so much more hope than there was twelve years ago – which is why we must not lose hope because there is a lot of research being done. You don’t realize how big the cancer world is until you’re stuck right in the middle of it, which is why it is important to connect with advocacy organizations, so you’re not alone. Through my experience in advocacy, I learned that every patient just wants to talk to someone else who has been in his/her shoes. If you tell your story, you might make a difference.

 

Melinda Bachini

Billings, MT, USA

Bile Duct/Liver Cancer (2009 – Present)

Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Patient Story Feature: The Ups and Downs of a Liver Cancer Journey by Anthony Villiotti

 

Anthony Villiotti HeadshotSt. Patrick’s Day seems to be a recurring theme throughout my liver cancer journey: I was diagnosed with hepatocellular carcinoma on March 17, 2017 and exactly one year later, I received the phone call telling me that I was getting a new liver. Before my battle with liver cancer, I had struggled with weight problems, diabetes, NASH, and cirrhosis. Within months after my liver cancer diagnosis, I received stereotactic body radiation therapy, which successfully stopped the growth of the tumor as I waited for a liver transplant. The wait was filled with emotional ups and downs, which was the worst part of the whole ordeal. I went from being optimistic for a new liver one day to writing my obituary the next. My liver was deteriorating. Hepatic encephalopathy and ascites were some of the many symptoms I experienced. After nine months of being on the transplant list, I finally received a liver transplant. Managing my health post-transplant has had its fair share of challenges: anti-rejection medication has made it more difficult to control my diabetes and weight, my kidneys have been damaged, and I still worry about the recurrence of NASH. So, having a successful transplant is half the battle, while keeping up with doctors’ recommendations is equally important.

A transplant can be a lifesaver, but it is not a get out of jail free card; after all, it carries ramifications that highlight the importance of early diagnosis and prevention as you are much better off not having to go through this obstacle in life. Unfortunately, early diagnosis and prevention is hampered by a lack of awareness around liver health. We grow up not knowing much about our liver. This further drives the stigma against having liver cancer. When my wife shared my liver cancer diagnosis with others, people often made assumptions about my alcohol consumption patterns. I was not destined to get liver cancer; rather, it was the end result of a combination of factors, including not being diagnosed early enough to take actions to prevent it. This is why as President of NASH-kNOWledge, I made it my and my organization’s mission to increase public awareness of non-alcoholic liver disease.

Anthony Villiotti

Springfield, Illinois, USA

Type II Diabetes (1985 – Present); NASH (2014 – 2018); Cirrhosis (2015-2018); Liver Cancer (2017 – 2018)

Patient Story Feature: A normal day in my life with PBC by Bob Tyler

Patient Story Feature: A normal day in my life with PBC by Bob Tyler

 

If you’ve ever seen the movie Groundhog Day, that’s probably the best example I can give about my experience with PBC. I know each and every day what my day will be like. Waking up is tedious due to the joints just aching because of no movement during the night. Feeling totally “unrested” even with 6 to 7 hours of sleep. Slowly making my way down the steps each morning to start my day knowing that my day is going to be mind over matter getting through.

I’m a more upbeat person with the attitude I’m here to live, not just survive. I truly enjoy life and the people I have in it, so no matter how I feel, I’m going to enjoy my day and hopefully hide as much of the “exhaustion and pain” I have from the people I’m around. Although I still work, I’m fortunate to mostly do it from home. But I take the day on as though I will be out and about by shaving, showering, and getting dressed for work and go in my home office and get on the phone and computer to start my work day.

Usually late mornings I need to take a break and catch a bit of a nap in my lounge chair, although my work is not physical, it still seems to wear me down. It’s  not uncommon for these naps during both day and late afternoon, the fatigue and pain throughout my body is a daily occurrence I just can’t seem to overcome. After work, we usually have a game to attend for one of the grandkids, which although really tough to motivate my body and mind to do, it’s the bright spot of my day watching them and having them know I’m there for them. Then off to home for dinner, a little TV, and off to bed by 10 p.m.

I need you to know one thing though, as bad as I think I have it, I’m blessed. I have a phenomenal support team: from my family, my Facebook support group, the PBC Foundation, and most recently the Global Liver Institute. As rare as this disease is, we have people fighting for us daily and I’m forever grateful for that. I also realize that with my daily struggles, we have medicine that slows this progression down that allows me to live the best daily life I can. Don’t misunderstand me, it’s hard on a daily basis, real hard especially knowing this is now my life. But reaching out for support and education and advocating for myself with my doctors allows me to do and be the best I can in my control.

 

 

 

 

 

 

 

Bob Tyler
PBC/AIH patient of 9 years

Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Bipartisan reform of organ procurement organizations (OPOs) will save lives

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Responses to misleading claims from the Association of Organ Procurement Organizations (AOPO)

Summary: HHS has proposed OPO reforms that will help thousands more patients access organ transplants. Misleading claims should not stop this lifesaving, bipartisan effort. Answers to new AOPO points below. The Global Liver Institute has highlighted previous misleading claims. Former HHS Chief Technology Officer Bryan Sivak called OPOs “some of the most obstructionist stakeholders I’ve ever come across. When OPOs fail, patients die.”

AOPO: “Under the proposed rule, the bar to “pass” CMS certification is arbitrarily set at the top 25th percentile thereby ensuring that 75% of OPOs – including those that perform among the world’s best – will fail to meet the metrics.” 

Response: The cut off does not come into effect unless there is a statistically significant difference between those below and above it, and is HHS’ response to drastic, unexplained (up to 400%) variation in OPO performance. Numerous studies show OPOs recover a fraction of available donors (e.g., HRSA’s Study, U Penn study published in American Journal of Transplantation, and investigative reporting from the Washington Post and the Associated Press). Bringing underperforming OPOs into compliance with HHS’ proposed standards would mean another 5,000+ organs transplanted each year.

AOPO: “Moving forward with this action would destabilize the donation and transplantation system without an identified path for OPO performance improvement potentially leading to loss of lives.” 

Response: There were originally 128 OPOs; now there are 58, with no data suggesting that these consolidations were disruptive. The health sector is able to handle transitions. As the status quo is costing patients’ lives – with 28,000 organs going unrecovered each year – transitions are long overdue. AOPO concedes the current metric is fraught with problems. DJ Patil, former Chief Data Scientist of the United States, in JAMA: “The current metric is unenforceable and thereby fails a basic public trust, ensuring that no OPO can ever be held truly accountable, no matter how many people die on the waiting list.” No OPO has lost a contract in decades and OPOs are lobbying to stall reforms. Baylor College of Medicine: “only the best performing OPOs should be surviving, while those underperforming centers are subject to consolidation or closure.”

AOPO: “Death certificates include the primary cause of death and inconsistently document secondary conditions such as if the deceased individual was COVID-19 positive or had metastatic cancer and therefore medically ineligible for donation.”

Response: Almost all errors in death certificate data pertain to the chain of events leading to death, not the final cause, so do not impact the ultimate determination as to whether the donor was viable for transplant. In fact, 92% of all causes of donor death are asphyxiation, blunt injury, drug intoxication, gunshot wounds, drowning, stroke, or cardiovascular causes, which is obvious to diagnose. AOPO’s invoking of “death certificate errors” is a red herring.

AOPO: “As both proposed metrics share the same data source as a denominator, i.e. donor potential based on death certificates, not only are they both calculated from a faulty data set, they are also statistically highly correlated. In essence, both proposed metrics measure the same thing….”

Response: HHS noted the rationale for these two metrics in the NPRM (pgs 16-17), which measure two distinct functions of OPOs: the ability to recover organs from a sufficient percentage of potential donors, and the ability to clinically manage the donors through the donation process in order to recover more organs from each donor. There has been extensive reporting about OPO failures on the former. For the latter, OPOs themselves have admitted to “gaming the process of meeting the [current standards]  by only targeting “high-yield” organ candidates” and are “incentivized to not pursue, or even evaluate the potential for donation of these types of [low-yield] donors. This practice results in fewer organs being transplanted, and more lives lost.” The new proposed rule addressed both of these key concerns using two distinct metrics.

Washington Post ed board: “in a system in which these nonprofits have an effective monopoly on organ recovery within their zones, there are few incentives for them to improve unless decertification is a serious possibility. The Trump administration should stick with its original instincts and finalize the rule, as soon as possible.”

 

Patient Story Feature: The Advocacy (and Research) That Saved My Life by Melinda Bachini

Hepatitis C: Our Worst Problem

“What comes to mind when you hear the word liver? Onions? Or a miraculous and essential organ that performs more than 500 functions? If a celebrity like David Bowie is reported to die from liver cancer, what would you think? Sex, drugs, and rock & roll? Or that actually, it’s the 2nd leading cause of cancer deaths globally, and something that could happen to you, your neighbor, or anyone you know?

When you see ads on television for hepatitis C cures do you jump for joy at the thought that we are an innovative nation that went from the discovery of a virus to a cure for a disease that affects more than 150 million people in less than a generation? Perhaps you just changed the channel.

Despite the fact that each and every one of us is potentially at risk for one of the 100-plus types of liver diseases or that hundreds of millions of people—from children to first responders and healthcare workers to veterans and Baby Boomers—are already affected, few people know much about liver diseases and all the things we can do to eliminate them.”

— Donna Cryer, President and CEO Global Liver Institute


For our inaugural post, we are excited to feature Andrew Cameron, MD, PhD, Head of Liver Transplantation at Johns Hopkins Hospital, Baltimore, MD and Board Member of the Global Liver Institute.

Our Worst Problem

By Andrew Cameron, MD, PhD

 

In 2004 I lived in Southern California and was training in liver transplantation at the busiest center in the US. I was told almost daily by my boss who was an indefatigable, irrepressible dynamo, that there was one battle that we still could not win.

“Recurrent Hepatitis C after liver transplant is the number one problem in the field,” he would admit in a depressed voice.

No obvious solution or hope on the horizon. What I saw daily in the corridors of the hospital proved him right: Hep C (a surprisingly common virus: around 4 million in the US have it, most don’t know it) is the number one reason to need a liver transplant. Liver transplants are all too few and far between, and many die waiting (4 or 5 each day, actually). Those who do win the lottery and get a lifesaving liver transplant for Hep C have the clock reset on their liver dysfunction but the virus re-infects the new liver immediately: 100% reinfection rate. And in fact, viral levels in the blood are 10 times greater a few days after the surgery than they were before.

Turns out liver transplant doesn’t cure Hep C, it makes it worse. The virus then attacks the new liver with a greater ferocity than before the transplant, and patients who were waiting with Hep C infection for 20 to 30 years before their new liver now had recurrent cirrhosis just a couple of years after transplant. Or even after only a few months! We learned the hard way (it was harder for the patients and their families) that when Hep C came back after transplant in that virulent fashion, there was nothing that could be done. No retransplant, no medicines, no hope. We lost those battles and it was indeed “the number one problem in the field.”

Now we win.

After struggling for years with the ineffective and toxic combinations of interferon and ribavirin for Hep C, we were given Harvoni about a year ago. “Harvoni” (which is a pill containing the antiviral drugs ledipasvir and sofosbuvir) was introduced clinically in October of 2014. One pill, once a day, for three months. Really no side effects. Cures Hep C in somewhere around 95% of patients. We win. At first, we gave Harvoni, when we could get it, to our patients with bad recurrent Hep C after a transplant. Beautiful transplant, doing great, turned yellow, progressed to near death, so much for winning the lottery. Gave them Harvoni and it was like watching a movie in which the hero gets the antidote for the deadly poison in the nick of time. A day after the first pill, they are a little less yellow. Each day a little better. Two weeks later, they get up, grab their suitcase and walk out the front door of the hospital. We now win every time.

I imagine that this is what it must have been like to be there when penicillin was discovered. Or maybe when HIV medicines got better and started really working. It’s miraculous to behold. Such a terrible disease now tamed. By the way, it’s not expensive. It’s cheap, all things considered.

Guess we need to find a new worst problem in liver transplantation.