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Peer-to-Peer: Take Small Steps to Everyday Advocacy

There was never a specific moment where I said, “Today is the day I start my HCV advocacy work.” For me, it evolved as the landscape around hepatitis C drugs began changing.

When we started using interferon-free regimens for the first time — for us, it was off-label with simeprevir/sofosbuvir (Olysio, Janssen/Sovaldi, Gilead Sciences) — to treat our many patients with HIV coinfection, we found ourselves restricted by insurance companies.

The advocacy work developed from the natural frustration of not being able to obtain these curative medications for my patients.

Hence, my first engagement in advocacy was out of desperation. I drove to Harrisburg, Pa., to meet with our state Medicaid leadership, bringing with me six examples of patients with advanced liver disease who were denied treatment they needed. I expressed the frustration and helplessness I felt as a provider wanting to give these patients a cure but being unable to do so.

The rest evolved from there.

Progress, Continued Challenges

From that initial meeting at the state level came the first set of amendments to the prior authorization criteria.

At that time, pricing still represented a significant barrier for the state and moving from an F3/F4 restriction to F0 was unlikely. Medicaid leadership and the Pharmacy and Therapeutics (P and T) Committee saw the value and the importance of opening access. They lifted the sobriety requirement, moved from F3/F4 to F2 and changed some of the language regarding the provider requirement. We went from requiring a specialist physician to an experienced provider, allowing for nurse practitioners and physicians assistants to prescribe these treatments.

I continued testifying at P and T Committee meetings when needed and pushing the issue of open access. As other states began dropping restrictions, we pushed further.

A dozen providers signed a letter to the Secretary of Health advocating for open access in accordance with the American Association of the Study of Liver Diseases and the Infectious Disease Society of America (AASLD/IDSA) treatment guidelines. Soon after, citizens, advocates and providers convened at the state’s Medicaid P and T Committee meeting with protest signs and testimony in support of open access. That day, the committee voted to remove the disease severity restrictions. The committee’s recommendation was sent to the Secretary of Health for approval. That vote took place nearly 1 year ago, and that recommendation has not yet been signed.

We have a long way to go in Pennsylvania, but we have even further to go in other areas. We need to continue to support others across the country.

Each provider should familiarize themselves with their state’s restrictions to HCV treatment. Although we have had some wins, particularly around the sobriety requirement, our partners in other areas of the country are still contending with discrimination against people who have a comorbid condition of addiction.

Everyday Advocacy

Advocacy for me, as a physician, takes different forms in my everyday life. For example, it can be as simple as not giving up on a patient who has been denied treatment.

Many times, we submit a prior authorization request for treatment for a patient that satisfies the restriction criteria of a given payer, but still we receive a denial. Advocacy can then become finding the time — which is extremely limited in a busy provider’s schedule — to call and wait on hold to conduct a peer-to-peer review so you can convince someone why this patient needs to be treated.

Another kind of advocacy occurs when you believe a patient should be treated but they do not meet the restriction criteria of a given payer. This is a bit more challenging because then you are trying to convince a system to change based on one patient.

I encourage you to submit for treatment even in this situation for two reasons.

One, it communicates to the patient that you believe they should be treated. These restriction criteria force providers to tell our patients their livers are not “sick enough” to qualify for treatment so they will need to return later for reevaluation. What that patient hears is that HCV is not a priority. If we submit a request for treatment, even when we know it will not be approved, it communicates the urgency directly to the patient.

Second, and maybe more importantly, this allows for every patient to be counted. Insurance companies often report denial rates, but if providers are only submitting what we think will be approved, the numbers will not reflect the need for treatment in the community. We, as providers are selecting what we have time to do instead of what the patients need.

Just the act of submitting the request is advocating for the patient and that patient’s voice and clinical need will be counted. That gives us as advocates a stronger leg to stand on. We would then get more accurate numbers of patients being denied.

Of course, beyond the individual patient, there are opportunities for advocacy in policy and government. For me, that comes with testimony at the State Medicaid P and T Committee, giving grand rounds lectures to other providers on barriers to care and their role as advocates and engaging others to our cause. I also provide expert guidance to legal counsel such as Robert Greenwald, JD.

Advocacy can happen when you respond to needs as they arise, whether they are for a single patient or for a state-level lawsuit.

With advocacy, you are trying to create — bit by bit — an environment for systemic change.

Next Steps

As providers, we often become mired in completing our charts, clicking the boxes for meaningful use and we often forget that we play a role that extends beyond the patient — the public’s health.

When you can truly cure a virus, it is a sentinel moment in history. However, the scientific advancement is meaningless if patients are unable to access it.

Here, in Philadelphia, I am the community co-chair of the Hepatitis C Allies of Philadelphia. This community coalition has been a driving force in Pennsylvania for much of the advocacy work around access to care and I invite anyone in our area to join us. We need more provider voices, more community-based organizations, more patients.

The National Viral Hepatitis Roundtable (NVHR) is a vehicle for advocacy on a national level. I serve as a medical advisor to NVHR. They do tremendous work and their website is a great resource for those needing guidance in their everyday advocacy.

As providers, we all want to provide the highest level of care for our patients. My advocacy stemmed from the frustration that I could not do that.

One of my favorite parts of my job is overseeing Philadelphia FIGHT’s HCV testing and linkage program. Our team works incredibly hard to offer testing to individuals at high risk who may not see their provider regularly and then link those who are positive to care. When patients overcome barriers — homelessness, mental health issues, addiction, lack of transportation — to show up to their appointment and engage in medical care, to then not be able to provide the highest level of care, we are failing. We are failing our patients. We are failing the public’s health. We are just failing.

Provider voices are more powerful than you know. As a potential treater, you have a certain amount of experience and education and your voice will be heard. If we have more voices, we will be more powerful in our message.

• For more information:
• Stacey Trooskin, MD, PhD, can be reached at 1233 Locust Street, 5th Floor, Philadelphia, PA 19107; email: strooskin@fight.org. Trooskin is planning an advocacy symposium for the 2017 Liver Meeting and invites contact from readers with their suggestions and questions.

Disclosure: Trooskin reports grant funding from and advisory board participation with Gilead Sciences.