# Presentation: 247841

## HCV/HIV Coinfection

- Jules Levin, Founder and Executive Director  National AIDS Treatment Advocacy Project (NATAP) based in NYC
-  HIV and HCV + for 18+ years
-  Founded NATAP 8 years ago
-  Initiated and led many advocacy efforts in treatment access
-  NATAP provides extensive quality treatment education programs: “Living Well With HIV & Hepatitis” radio show; printed materials; web site; community education programs and symposiums; individual patient management program
-  Served on CCG/ACTG; FDA panels; many advisory boards

- PACHA

- NATAP

## RECOMMENDATIONS TO PACHA

**Incorporate into Ryan White & HRSA Progs.**
- Testing and counseling at all HIV test sites
- Education and training for patients, doctors, and service providers (HIV, drug programs)
- Support services: mental health, adherence & support programs
- Access to care, treatment, and diagnostics
- New drug research
- Care & treatment access for IV drug users

- PACHA

- NATAP

## Hepatitis - HIV Coinfection

** ****4 million have HCV in USA; 2.7 million people with chronic HCV in the USA, and 900,000 with HIV**
**175 million worldwide with chronic HCV**
**15% infected with HCV clear it; HIV may impair clearance by impairing immune system**
** ****85% go on to chronic infection**
** ****Only 20-30% get cirrhosis in HCV monotherapy**
** ****Of those who develop cirrhosis, 25% decompensate (serious complications), and 1-4%/year get hepatocellular carcinoma (liver cancer)**

- PACHA

- NATAP

## Why is HIV/HCV Coinfection Different

- The major way HCV is spread today is by IVDU
- HCV is transmitted more easily than HIV
- In first year of IVDU, 80% get HCV
- More IVDUs in methadone clinics appear to have HCV than HIV
- HIV impairs the immune system thus HCV accelerates more quickly in HIV
- Do coinfected persons respond to therapy as well as patients infected with HCV alone? In short, we don’t know for sure yet; *although studies suggest they approach similar response to therapy, there are significant barriers in the most affected communities*

- PACHA

- NATAP

## Coinfected Patients are Different !!!

-  ***They are the most vulnerable group***
-  Mostly former or current IVDUs
-  sexual partners of IVDUs
-  African-Americans, hispanics, Women
-  Poor
-  Uneducated
-  Have less access to medical system
-  Often have never been to see a doctor since they were busy using drugs
-  Don’t trust the medical system, meds, doctors
-  Case managers are not educated about HCV & coinfection

- PACHA

- NATAP

## Coinfected Patients are Different

-  Patients are angry because they often were recently diagnosed
-  I suspect that often testing has not been conducted
-  case mgrs may not be aware testing is required in at-risk persons
-  patients & case mgrs may not know they are at risk
-  Testing was just mandated 2 yrs ago in NYC

- PACHA

- NATAP

## Coinfected Patients Are Different

-  Patients don’t understand the system & how to navigate it
-  basic mistrust of drug treatment and doctors
-  If they are in recovery they are just beginning to try to get their life together: housing, benefits, substance abuse treatment
-  often they are not coherent to fully understand their health situation
-  they receive care at sub-standard facilities, doctors, or clinics
-  Doctors often give them less attention & proper care because they are drug addicts & hard to deal with

- PACHA

- NATAP

## Coinfection Is Different Than HIV

-  **HCV is a different disease than HIV: both diagnostics & treatment have differences**
** ****Different language: viral genotype, biopsy, HCV viral load is different, sustained viral response**
** ****Often it is difficult to educate them about HCV**
** ****agencies that provide services to them are all too often not familiar with HCV, don’t understand the impact of HCV, and don’t understand how to get good care for their clients**
** ****HCV may be “curable”- nucleus, relapse 2 yrs, small studies show no return, can’t find in liver or blood**

- PACHA

- NATAP

## Reimbursement Issues are Different

-  Public reimbursement for diagnostics and treatment is spotty: hard to get treatment & all diagnostics covered
-  In some states even treatment for HCV is not covered well by private insurance
-  ADAPS won’t want to pay for treatment & diagnostics
-  Will Medicaids cover this
-  Who will provide HCV medical care for coinfected patients: HIV or hepatitis doctors, this is not resolved- 2 yrs
-  HIV doctors don’t know HCV & hepatitis doctors don’t know HIV

- PACHA

- NATAP

## HCV is a Special Problem for Patients with HIV 

**One study showed coinfected patients had 3 times as much cirrhosis**
**End stage liver disease has been reported to be a leading cause of death in HIV-infected patients by several studies; although this is not well defined & needs study, liver failure & ESLD are of increasing in HIV, particularly due to living longer with HIV**
**The 2001 DHHS Guidelines recognized this declaring Hep C an opportunistic infection**

- PACHA

- NATAP

## Slide 11

- PACHA

- NATAP

## How is HCV Different From HIVand Why Education is Important

-  HCV viral load is different
-  500,000 is low in HCV, high in HIV
-  In HIV viral load predicts outcome
-  In HCV viral load does not predict outcome
-  You could have low HCV viral load and cirrhosis
-  HCV treatment is harder to tolerate, but therapy is time limited- 6/12 months; less if not responding
-  Often patients will stop therapy even if they are doing well
-  Patients don’t understand that interferon may have antifibrotic benefit and slow liver disease without viral load response

- PACHA

- NATAP

## Education Is Important

-  Education is important not just for patients but for doctors & other care & service providers
-  A common misconception is a biopsy is not necessary: this saves money & trouble
-  Language is different: sustained viral response, end-of-treatment response, genotype, nonresponders, relapsers, fibrosis, antifibrotic effect
-  HCV therapy is hard to tolerate: patient support services are very important
-  Adherence is important like in HIV; support services needed
-  Self-injection may be a concern for IVDUs
-  What about alcohol & IVDUs being denied access: needle exchange; harm reduction

## There are many unanswered research questions

-  Will coinfected patients respond as well to treatment
-  Should HCV treatment be first, before HIV treatment
-  Does HAART delay, accelerate or have no effect on HCV progression: we don’t know !
-  If so in whom: we don’t know !
-  We don’t understand many potential cofactors for disease progression in coinfection
-  For example, lipodystrophy, abnormal lipids, sugar-- do these factors accelerate HCV disease

- PACHA

- NATAP

## This problem is not getting adequate attention

-  The communities affected are not powerful advocates, often don’t have any representation, and not very familiar with overall problems
-  Congress is not familiar with the problem
-  The administration is not familiar with problem
-  Often powers that be don’t want to spare the resources for this problem
-  For example, ADAP; who will pay for HCV medications for coinfected?

- PACHA

- NATAP

## Initiatives  - Take Away Messages

*What do we need:*
-  1. Coinfection education for patients, doctors, service providers; training fellowships for doctors (minority)
- 2. Funding to improve care
- 3. More and better research on coinfection questions
- 4. Money for reimbursement of treatment & diagnostics: adjust ADAP formulary; earmark ADAP money to HCV; separate short-term program to fund HCV treatment; states must pay attention & put up money.
- 5. Prioritize w/Congress & administration
- 6. Raised awareness for testing & education about coinfection, prevention

- PACHA

- NATAP