Introducing Austin Liver Foundation - A Hepatitis C advocacy group

Introducing Dr. Tashmeem Khan MD, President of the Austin Liver Foundation.

"Our mission at ALF is to create awareness and emphasize and promote the importance of screening and to facilitate the best modalities for treatment to achieve the best cure rates and in the long run treat to prevent by providing educational opportunities to the patient population". 

  

The newly formed Austin Liver Foundation is a non profit organization comprising of a team of dedicated professionals working closely with a national network of trained doctors and clinicians focused on providing the best level of care customized to the individual needs of each hepatitis c patient provided by us as well as all the treatment options available through our linkage to c care to "choose wisely" for a "new life".

Austin Liver Foundation - empowering the Hepatitis C community all over the globe to get C tested, get C treated and get C cured.

The Hepatitis C infection, at best is like a low-grade fire smoldering in the basement of your home. Eventually it will turn into a raging inferno. 

Additionally, certain lifestyle behaviors only make it worse. Hepatitis C increases the toxicity of alcohol to the liver exponentially. it is analogous to pouring gasoline on that same smoldering fire. 

A poor diet with excess fats and fried foods only make the liver work harder. These prolonged behaviors will compound your condition and eventually lead to fatal liver diseases. 

Today, more people die in the United States as a result of Hepatitis C than HIV/AIDS.

Hepatitis C is also one of the largest causes for liver transplants. Unfortunately, only a small fraction of the people that need them can actually receive them.

The Austin Liver Foundation's eventual goal is the global eradication of Hepatitis C. This is our plan on how we intend on accomplishing it.


Austin Liver Foundation Grant Request

To Whom It May Concern

The Austin Liver Foundation is a non-profit 501.c.3 organization whose goal is to serve, to educate and to advocate for the hepatitis C [HCV] patient to live better. Our vision is to empower the hepatitis C patient to take charge of their lives through education, disease awareness, testing, and linkage to care by facilitating the best route to achieving a cure. Our philosophy is based on the hepatitis C patient striving to begin “A New Life” by being educated about the need to learn more about the potential negative impact on their lives and how this can be reversed through a cure.  

Hepatitis C is a major healthcare concern in the United States, with as many as 5 million individuals chronically infected, and associated with significant morbidity and mortality. Despite the availability of new direct acting antiviral agents, hepatitis C remains an underdiagnosed and undertreated condition. Poor communication among clinicians, hepatitis C experts, local and state health authorities, and patients has led to misconceptions about the disease, which adversely affects the medical care rendered for hepatitis C. Additionally, there exists an almost complete lack of community awareness regarding hepatitis C and its risk factors, natural history, and treatment options -- this leads to both underdiagnoses and under treatment of the infection.

The Austin Liver Foundation believes that improvement in hepatitis C healthcare delivery begins with clinician and community education. A confident and comfortable healthcare provider will be best able to deliver compassionate, competent, state-of-the-art care to his/her patient population. An educated community will be more receptive to the challenges of the disease and therefore may be more willing to seek appropriate medical care. With an educated healthcare provider and patient, the clinician-patient relationship is generally better, which allows for improved communication that will hopefully lead to greater access to care and improved outcomes, both in terms of achieving a cure and patient related outcomes [PRO].

In order to achieve success in improving hepatitis C outcomes, the Austin Liver Foundation has begun the process of developing a strategy to address several key issues. Although many agencies are attempting to do this, the Austin Liver Foundation is putting together, with input from the hepatitis C community (patients, healthcare providers, advocacy groups, and community clinics), a strategic plan for an approach to the problem of hepatitis C. This plan outlines a coordinated approach to all aspects of this condition, ranging from ways to control and prevent the spread of this infection to education and counseling, and stratifies the approach into 4 main pillars. These "pillars" are prevention, education, research, medical care and treatment.

The Austin Liver Foundation is planning to proceed with 3 programs for 2014-2015. These programs are wholly centered on education. These programs will lead to a greater understanding of all aspects of the infection among the medical community [including primary care physicians] and the general public. The education process will be culturally sensitive and linguistically appropriate for the persons, populations, and communities at risk. A forum will be provided for those individuals infected with hepatitis C that will encourage them to lead a lifestyle focused on slowing disease progression and avoiding disease transmission.

To successfully achieve these pillars, The Austin Liver Foundation would like to apply for an unrestricted educational grant in amount of $0 for the following programs:

1] Linkage to C Care – “Choose Wisely”

Linkage to C care is a newly developed website and smart phone app that will assist people with HCV to enter into HCV medical care by choosing wisely the medical provider that best suits their needs and the medical therapy that has the highest certainty of achieving a cure. Newly HCV-diagnosed persons need to connect quickly with a HCV provider and remain in care. Linkage to C Care involves:

• Educating patients about the health and prevention benefits of being in care.
• Establishing infrastructure to link people to care and providing linkage services.

Enrolling into the Linkage to C Care program:

• Increases the likelihood of newly HCV-diagnosed people accessing HCV treatment and remaining in HCV care.

• Provides patients the opportunity to get cured of HCV, thereby experiencing better health outcomes and significantly reduce the risk of transmitting HCV.

Linkage to C Care health literacy program will:

• Educate patients about HCV, liver disease, and specific details about treatment regimens
• Educate patients about short-term and long-term harms of treatment – AE’s, effects on functioning, quality of life and other medical conditions
• Target high-priority populations with culturally sensitive and linguistically appropriate educational messages

2] One Liver to Live Right

We will seek access to drug rehabilitation centers and methadone clinics to educate young adults in recovery about (i) HCV and its exposure risks (ii) HCV screening, and (iii) new HCV treatment options.  Our hope is that the education process will lead to a willingness to be screened for HCV and, if positive, link the individual to treatment.  The outcome of this project is to increase HCV screening in the PWID population and provide linkage to care in hepatitis C positive patients.  Our challenge will be to make the educational materials relevant and appropriate for this young adult population. Our intentions are to increase their willingness to be screened for HCV, understand the impact of this virus, and, if HCV-positive, seek and complete treatment to cure.  We are targeting a drug treatment center and methadone clinics because this environment can give us access to a large number of individuals at high risk for HCV.  A plan to capture this young, willing, at-risk population to HCV treatment involves increasing education, screening, and linkage to available care by working through environments, such as drug rehabilitation centers and methadone clinics, that cater to this audience. Targeting these young PWID will be an effective way of reducing the prevalence and incidence of the HCV infection.

Goals:

1. Educate

Provide education about transmission of HCV in order to decrease rates of transmission and emphasize who should be tested. Provide treatment options for those that test positive for HCV. Offer the HCV antibody screening test after providing educational session. Participants that wish to be screened will be asked to complete a brief survey providing information about their location/year of birth, risk factors for HCV, and socioeconomic status. Patients that have a positive HCV antibody test will be provided additional education regarding the necessity to receive HCV RNA testing and possible treatment options.

2. Linkage to care

Patients that test positive for the HCV antibody test will be referred for the HCV RNA test and genotype testing. Insured patients will follow up at Austin Hepatitis Center and non-insured patients will follow up at CommUnityCare Hepatitis C Clinic. If the HCV RNA test reveals chronic HCV, patients will be provided with additional treatment information regarding their genotype and will receive HCV treatment.

3. Treatment

Patients will have their first visit at the clinic and, if they qualify for the Austin Hepatitis Center or CommUnityCare Hepatitis C Clinic, they may choose to have follow-up appointments via telemedicine.

Outcome measures:

1. Patient demographics: Compare baseline data from survey results with the national average using the chi-squared test.

2. Patient knowledge-base: Test via pre and post quizzes to assess willingness to screen and understanding of Hepatitis C virus.

3. Sustained virologic response (SVR): Test by blood draw 12 weeks after completion of HCV treatment.

4. Adherence to treatment: Self-report by patient.  

3] “A New Life”

A one day educational, awareness and advocacy program where those who are cured of hepatitis C will discuss the journey they have travelled to achieve of “A New Life”.  Such a program will demonstrate to the general public that there are many wrong misconceptions circulating around hepatitis C and its treatment. This program will empower the general public and those who have a stake in promoting hepatitis C advocacy to learn that there is truly ‘A New Life” after being cured of hepatitis C and we should all encourage greater communication about the value of entering into hepatitis C treatment care.

As previously stated, our vision is to empower the hepatitis C patient to take charge of their lives through education, disease awareness, testing, and linkage to care by facilitating the best route to achieving a cure. We believe these 3 programs are a step towards achieving these goals that will wholly benefit the hepatitis C community.

Please make the grant payable to The Austin Liver Foundation., Tax I.D., and send the check to: 2200 Park Bend Drive, Bldg 1 Suite 300, Austin, TX 78758.

Yours Sincerely,

Tashmeem Khan, M.D.

President, Austin Liver Foundation

Imtiaz Alam, M.D.

Board Member, Austin Liver Foundation

Medical Director, Austin Hepatitis Center

Clinical Assistant Professor of Medicine, University of TX, Southwestern

Hepatitis C: The Silent Killer

“A New Life” – 
Get C Tested! Get C Treated! Get C Cured! 
A Call for Action by Taking Charge of Your Life!
 

Tashmeem Khan, M.D.

President

Austin Liver Foundation

Imtiaz Alam, M.D.

Medical Director

Austin Hepatitis Center

An estimated 3 percent of the world's population — more than 170 million people — carry a mysterious virus that silently attacks their livers, often without their knowledge. That's because up to 80 percent of those infected with the hepatitis C virus (HCV) have no symptoms at all. In fact, most people don't know they have the disease until decades later when liver damage shows up during routine medical tests. Hepatitis C is one of six identified hepatitis viruses — the others are A, B, D, E and G. All cause the liver to become inflamed, which interferes with its ability to function. Over time, HCV infection can lead to liver cancer, liver failure or cirrhosis — irreversible and potentially fatal scarring of the liver. It ranks second only to alcoholism as a cause of liver disease and is the leading reason for liver transplants in the United States. Unlike HIV, the virus that causes AIDS, HCV is rarely transmitted through sexual contact. Instead, its primary mode of transmission is contaminated blood — through needles shared by drug users or through blood transfusions. Other potential ways HCV can be transmitted include acupuncture, tattooing, sharing certain personal care items [e.g. razors, toothbrushes, nail clippers, or nail files], transmission from a mother to her unborn child and intranasal cocaine use through the sharing of straws. Nearly 4 million Americans have been infected at one time with HCV and close to 3 million are chronically infected. Most are baby boomers or people born from 1945-1965. Baby boomers are 5 times more likely to have hepatitis C. If you were born during these years, talk to your doctor about getting tested. HCV infections are rising among adolescents and young adults, apparently in part due to needle sharing that spreads the virus. Although vaccines exist for hepatitis A and B, no vaccine for hepatitis C has been developed, primarily because the virus has many subtypes [genotypes and quasispecies] that change rapidly.

Normally, HCV produces no signs or symptoms in its earliest stages. When it does, they're generally mild and may include fatigue, nausea, poor appetite, joint pains, or tenderness in the area of your liver. In many cases, symptoms may not appear for up to 30 years. Some people will develop cirrhosis, usually within the first two decades after infection. Of those who develop cirrhosis, fully half progress to end-stage liver disease or liver cancer. Currently, about 10,000 people die each year of HCV, but that number is expected to triple by the year 2020. Hepatitis C can cause damage to your liver even if you don't have symptoms. You're also able to pass the virus to others without having any symptoms yourself. That's why it's important to be tested if you are born between 1945 through 1965, or you think you've been exposed to hepatitis C or you engage in behavior that puts you at risk. CDC and U.S. Preventive Services Task Force now recommends that anyone born from 1945 through 1965 get tested for hepatitis C. A simple blood test looks for the presence of the hepatitis C virus, or viral load, in your blood. If the virus is detected, it means you have hepatitis C. To check how your liver is functioning, your doctor may also conduct another blood test called a liver function test [LFT]. Your doctor may also recommend a liver biopsy, a procedure in which a small sample of liver tissue is removed for microscopic analysis. A liver biopsy is the best way to measure the extent of liver damage and to track the progression of the disease. Less invasive tests can also be utilized to determine the degree of damage to the liver. A Fibroscan is a non-invasive imaging study that evaluates the degree of liver stiffness, or scaring, known as fibrosis. It does this by determining the speed of sound waves through the liver utilizing a sonogram.
Similar to blood tests such as Fibrotest and fibrosure, the fibroscan works well in determing the 2 extremes of liver disease - minimal or no scarring from cirrhosis. It does not work so well in evaluating moderately damaged livers

The goals of treatment of chronic HCV infection are to (1) achieve sustained eradication of HCV (i.e., sustained virological response [SVR]), defined as the persistent absence of HCV RNA in serum 3 months or more after completing antiviral treatment and (2) prevent progression to cirrhosis, liver cancer, and decompensated liver disease requiring liver transplantation. The standard treatment for HCV is evolving and is now all oral medications known as direct acting antiviral agents [DAA]. This combination therapy can get rid of the virus in over 90% persons with genotypes 1-6. Treatment may not always be easy. People will experience varying degrees of side effects. Therefore, taking HCV therapy requires your active participation and a strong commitment to finish what you’ve started.

See your doctor if you think you may have been exposed to the hepatitis C virus, if you notice your eyes turning yellow or if you have any other symptoms of hepatitis. Don’t let concerns about what others may think keep you from getting tested. Millions are fighting back against hepatitis C, are you ready to join them? Take charge of your life by Getting C Tested! Getting C Treated! Getting C Cured! Begin “A New Life” cured of hepatitis C.