Dr. Diana Sylvestre: Addicts' Lives After Hepatitis C

Dr. Diana Sylvestre: Addicts' Lives After Hepatitis C

Inside Running A Revolutionary Clinic

By Fallon Davis

It is always refreshing to hear about a doctor that loves to help people fight for their health. With a plethora of diseases in the U.S., no one would ever think that more often than not, doctors prefer to skip treating Hepatitis C patients for reasons that seem unjust to the infected.

Unfazed by the complications of working with Hep-C patients, Dr. Diana Sylvestre took matters into her own hands and opened a clinic specifically catered to Hepatitis C patients. O.A.S.I.S is a non-profit organization specifically interested in the progress of former drug addicts and their Hepatitis C. Dr. Sylvestre is an activist for Hep-C. She has organized protests to help fight for more government resources. Her patients have joined her at rallies to improve healthcare drug prices and extended care for Hep-C patients.

Dr. Sylvestre received her medical degree from Harvard. After moving to the Bay Area with her husband, she found her calling after conducting entrance examinations for drug addiction treatment centers.

In your interview with the NY Times, you said “People will use a lot of excuses not to treat patients with Hepatitis C,” why is this the case?

I was speaking about mostly doctors and people who can treat Hepatitis C. The problem with Hep-C is that the underserved have difficulty getting access to care for a number of reasons. One is financial reasons but the other reason is that there is a lot of stigma and prejudice against a medical condition of addiction because of misinformation.

That’s the thought process around what it means to have a drug problem. Clinicians avoid treating Hep-C figuring that there is no way people who have a drug problem will get through treatment but that is simply not true and the data supports that. It was only the treatment was really difficult people who could be the source of the epidemic, people who really needed treatment, wanted to reduce the impact of Hepatitis C in our communities.

So, people know about Hep-C, but they don’t want to deal with it? Is that how it is with doctors?

I think there are many reasons doctors may not want to deal with it (Hepatitis C) and we have to give them credit. Treating Hepatitis C until recently was really hard and then we add an extra layer of complicated medical conditions like mental illness or addiction and that associated with homelessness or social instability.

People couldn’t handle it. They worry about creating serious medical things like Neutropenia, exasperated depression or mania. It’s hard enough trying to treat Hepatitis C in a so-called normal person without that extra layer of complications and some people felt like they couldn’t handle it.

I get that but that was one of my big disappointments because I always wanted drug treatment programs to take up Hepatitis C. Like I said it was probably too complicated to do that until recently. They are not accustomed to taking care of internal medicine patients and creating medical problems that you have to adjust to. Times have changed so I am really hoping with the release of the new places like Oasis that will be the source of treatment for people who have Hep-C can transition. Therefore, offering opportunities to end the epidemic.

What are the most helpful programs at your organization that are beneficial for your Hep-C patients? Do you have different ways of treating your patients? What are those methods?

We have a signature program specifically for Hepatitis C. It is designed to engage the most challenging patients that have those addictions… homelessness and alike. It uses peer educators in an integrated group model of support education that we have grown up through our system throughout the years.

In other words, people will show up off the streets and come to this program to try and build the Hepatitis support group. The office will have pizza or lunch and people will come by to check it out and maybe get tested. It really is an education and empowerment program and the key is to actively involve peers. They show up lacking confidence and they come to get educated and learn to advocate for themselves and get treated for Hepatitis C.

They took it upon themselves to be responsible for the new people and that benefits me. People walking off the streets do not exactly trust me because I represent a medical profession not known well by them. Peer educators make the initial contact and then hand off these folks to me.

Treating them is really easy because they want to take part in their treatments, they want to adhere, they want to comply. What seems in most people’s minds like this big extra thing you do to treat Hepatitis C has actually made my life easier. We can successfully treat the most challenging patients for Hepatitis C within a one-hour a week group program.

Does OASIS ever work with AA or NA? Or are you strictly a medical clinic?

It is a completely integrated program. We offer Hepatitis C intervention, medical care, education, and support all at the same time. We believe that is what you need to do if you want to be successful with the most challenging patients. We treat addicts, of course, but we treat Hepatitis C because we think Hepatitis C is the most important disease in the world.

We use Hepatitis C as a carrot to lure people into our clinic. They are like, “Oh, I have Hepatitis C, I’ve got to get this taken care of.” They are out there using, drinking, their mental illness is untreated, and their hypertension is out of control because they do not want to see a doctor.

They come in and we say “you have Hepatitis C, we want to help you with that and by the way, we can work on __. How about taking a blood pressure pill?” So we learn that Hepatitis C is an interesting carrot to lure people to get them interested in their medical care. Once they become interested we can empower them to take control and most of these folks never believed they could do that.

I want to work on whatever it is that they need work on and Hepatitis C is just one part of that equation. Because Hepatitis C has this aura of seriousness and death about it which isn’t usually true, but can be. People will come in giving us the opportunity to look into whatever it is that these people need or maybe offer something else.

Years ago when you were working at the clinic and you noticed that people weren’t getting tested for Hep-C, was that your only motivation to start OASIS? Do you have any family history with it? Or was that strictly the reason?

My family has the same issues as everyone else’s. Everyone’s family has some issue with alcohol or drugs. My motivation and the reason I got into medicine was because I wanted to take care of patients. These are patients who were not getting care because they were kind of hard to take care of. I enjoy trying to figure out how to help them.

I don’t enjoy algorithmic medicine which is not fun and when I started doing this there was this huge need. In a group of patients that had a horrible reputation, they turned out to be the most wonderful, interesting, funny, and caring group of people I have ever taken care of. So why wouldn’t I want to take care of them? When I interviewed for medical school that’s what I said I wanted to do and I’ve never changed that. I did what I said I wanted to do.

What is a typical recovery plan like for your new patients? The Hep-C combination drug Elbasvir and Grazoprevir is said to be more effective and safer, than the combination of Sofosbuvir and Pegylated Interferon with Ribavirin in certain patients with Hepatitis C. What are the differences between the two? Why does one work better than the other?

There is a lot of new medications. There are the newest ones like Grazoprevir, Harvoni. They all work great they are unbelievable. No injections, side effects usually minimal. They have revolutionized the treatment for Hepatitis C.

The main side effects of these new treatments is they’ll shrink your wallet. The newest one, Epclusa for 5 weeks is about 75K. It is really expensive, I agree. There are subtle differences. The newer ones are vastly easier to take than the previous generation and vastly more effective. The generic ones were not cheap either.

I understand you are an activist for Hep-C and are constantly fighting for government resources. What are the top 5 resources Hep-C patients require? If you could ask 5 things from the government, what would you ask for?

I do not want anything from the government. That is not my style. What I would want is more data to show what are the appropriate models of care for people who have Hepatitis C. We need to eradicate this epidemic. I would say the government needs to support more research in Hepatitis C.

How do you keep your non-profit afloat? Do you have issues getting funding from the government? Are there still some things that you feel like you should fight for?

The insurance industry is a disaster now. It is not taking care of patients, it’s filling out paperwork and how to meet medicare compliance. I do everything cleanly and right and I can’t keep up with all the regulations. My secretary called because we had to get recertified and it’s the second time this year.

She gave her information and they immediately cut off my medicare because her name wasn’t on it and they were concerned with fraud. This is the bad part of Obamacare that people do not know about. That’s why many doctors are unhappy, they have to deal with administrative stuff.

When you visited these methadone clinics in the 90s, in hindsight, what would you have done differently to treat these patients? In contrast, how is OASIS different from methadone clinics? Do you think these facilities are responsible for illness in Hep-C patients?

When I started doing it the treatments for Hepatitis C were just becoming viable. To be quite frank, when I started I didn’t know what was going on with everyone’s liver function test or blood test. I was learning on the fly, I am not a hepatologist. So it took me some time to figure out the medications. It took me some more time to figure out how to offer these medications to people who need it.

An initial foray into that was within the form of a small clinical study, which I think was the right thing to do. There was no way to do it any differently or any better because we did not have many tools in our tool chest at that point. What I am happy about is that we spent a lot of time figuring out how to engage. Now with the treatment being so easy, that is paying off big time in dividend because now people come in from wherever they are in the state of California and we can treat Hepatitis C.

Basically, I can do their screen and in a week I can apply them their medications. I get them started on treatment because I have a program that knows how to engage them. Without waiting we just get them treated and get Hepatitis C out of the community. We are hoping that will pay off in terms of loose transmissions.

What are your views on Pill Mills (illegal drug prescription facilities) and lack of addiction treatment facilities prescribing the accurate amount of prescription meds?

I’ve seen this for a long time. The worst case scenario. There was a doctor here (Oakland) that once a month would give you about 100 mg of Vicodin or something crazy like that. He would only continue to do so if you brought half of them (pills) back to him. That guy should be arrested and in jail.

But there are some who are trying to do the right thing that are perceived as not doing the right thing because they are trying to help people. The drug treatment programs offer these medications where they have counseling and services and you can’t really do that in an office. The regulations generally prevent you from doing too much of that. It is a really hard issue now. We were all pushed to give a lot of pills for pain 10 years ago and now we are all told don’t give any pills for pain.

You never really know what the appropriate thing to do is. The way to do it is to give as much as patients need to absolutely function, but not too much and that is tough. The true pill mills like the guy I told you about should be shut down. Because they sell them on the street on a secondary market.

How do you feel about Obamacare’s ability to distribute medication to your patients?

For the first time, everyone that walks into my clinic has insurance. That hasn’t been the case for a long time so, that part has been fabulous. The part of Obamacare that has made that happen is the Medicaid expansion in the state of California.

That hasn’t happened in every state. The private insurance that people can buy in on the exchanges has not been so helpful. Overall, it is a good start. Do I love Obamacare? No. Do I like it? Yes. I just want to see it move forward.

What do you think is a way that Obamacare can benefit everyone and not just the lower income?

I say there should be medicare for all. Medicare is an insurance plan that works really well. I would advocate for fully reducing the age of medicare ability until everyone has access to it. It has become less easy in the age of Obamacare. There is a new layer of garbage that has laid into medicare because of Obamacare. I do not like that, but on the other hand, I do not have another insurance plan for you.

Private personal is a disaster. It has improved things but there are still millions of uninsured people and part of the reason why we do not have a direct plan yet. For the first time I have the ability to treat the underserved because they have access to insurance in the state of California because California expanded Medicaid because of Obamacare.

On the other hand, there is a lot of garbage that goes on with the insurance industry. If I were to say “Ok, I have a patient with Hepatitis C, what plan would I recommend?” I couldn’t figure it out. I could treat people on medicare but I have many instances where the private companies won’t pay for the medications for Hepatitis C or they pay for it after a $4,000 deductible that people can’t afford.

In addition to taking care of people in our clinic, we do a lot of activism. I have always been a big user of free patient assistance programs. It’s difficult getting access to insurance and drug plans. We were able to treat patients with Hepatitis C because free medications were available. We (community) hit the streets last July and in 2015, they decided to cut the patient assistance programs for anybody that had insurance which means almost everybody in this country.

That just infuriated me. Just yesterday I had a guy close to seventy who wanted treatment for Hepatitis C. He had medicare but he hadn’t signed up for part D because he didn’t think he could afford it. So he had the insurance but no ability to get the medication. We applied for the patience assistance program and behold — it changed their mind.

Now, I got this guy free medication. I don’t spend a lot of time complaining and moaning about the cost of medication. I do not like it, but on the other hand, I am appreciative to be able to treat Hepatitis C. In the 20 years that I have done it, I can realistically get other people to do it. Pharmaceutical companies are making a lot of money, they need to give back.

Many pharmaceutical companies argue that their prices are due to production costs of researching and developing new drugs. The American College of Physicians is currently pressing for full disclosure on production costs. Do you think this will be a problem? Would it matter if by law they had to disclose this information?

Not every drug makes it to the market, so it is very hard. What are the costs of making it or what about the things that get into the market? There are public companies who are beholders to their shareholders.

Can you tell me any other companies that have revolutionized the treatment of Hepatitis C? You can’t. I do not like the costs but the benefits are so high. I am willing to swallow it as long as I can always get medications when I need them. Pharmaceutical industries should be involved in making sure their medications are accessible to all people who have the condition. If they are willing to sell them (medications) at a high price, they should be willing to give them out for free to people who can’t afford that.

What’s your take on Medicare not currently being able to negotiate drug prices?

Drugs are already being manufactured here, the problem is the price they are being manufactured at. There is no reason to import it when we have plenty of it here. I would like to see the govt. be able to negotiate prices. There needs to be this transparency and ability to negotiate prices with big blocks of people, like people from Medicare. That would help take the price down.

Not only pharmaceutical industries, politicians have come up with these ways of reducing the cost in this country. It is costly to develop these fancy drugs. These are fancy drugs but they are highly effective. We want the market to come to bear them, then we can institute other tools that capitalism has to bring the cost down to negotiate prices, but they do not do that.

If you would like more information on Dr. Sylvestre’s clinic or have questions, visit Oasis Clinic. 

I'm Fallon Davis, the Managing Editor of The #MakeHealthPrimary Journal. I love talking to people and learning about what passions they have. I have a B.A. in Mass Communications with a focus in broadcast production and over a decade of experience interviewing professionals and writing for publications.