Skip to main content
Coordinating Care in a Specialized Clinic a Proven Way to Treat Amyloidosis

You are listening to Health Library:

Coordinating Care in a Specialized Clinic a Proven Way to Treat Amyloidosis

May 14, 2015

Episode Transcript

Interviewer: If you've been diagnosed with a condition called amyloidosis", you know finding a clinic that can treat the condition that has all the experts you need can be a little challenging. We're going to talk to one of the specialists at the University of Utah and Huntsman Cancer Institute Amyloidosis Clinic next on The Scope.

Announcer: Medical news and research from University of Utah physicians and specialists you can use for a happier and healthier life. You're listening to The Scope.

Because amyloidosis can affect so many different organs and it affects everybody in a different way, in order to get effective treatment, you really need to go to a clinic that specializes in that treatment that has all the physicians that you would need to see under one roof so you don't have to try to coordinate your care.

There is such a clinic at University of Utah Hospital. It's ran jointly between University of Utah Hospital and Huntsman Cancer Institute.

We're lucky enough to have Dr. Jose Nativi here. He's a Cardiovascular Director of the Amyloidosis program at the University of Utah and Huntsman Cancer Institute.

This is an inter-disciplinary clinic as they say. You're a cardiologist. What are some of the other type of specialties that are in this clinic?

Dr. Nativi: Because of the nature of amyloidosis to tend to affect several organs, what we offer in our clinic is a multi-disciplinary practice, not only about with doctors but including . . . the patient will come and he will be evaluated by a nutritionist. There's a lot of misconceptions about what to do in nutrition. Some patients because they believe that the disease is a protein issue, they will stop eating protein.

Interviewer: And that's not how to solve the problem.

Dr. Nativi: No. They need a lot of counseling, a lot of teaching. They will be seen by nutritionists, a social worker, a cardiologist, a nephrologist, a hematologist and then also depending on the situation, the patient might be seen by a neurologist and other providers.

The idea is the patient in the first visit is evaluated by a comprehensive team and depending the type of amyloidosis, the organs that are affected, then we can target the therapies individualized for each patient, each case and what organs are affected.

Interviewer: Sometimes I think people might think that this thought of targeted treatment is kind of a buzz word. But it sounds like in this particular disease where it could be caused by proteins coming from different sources, it can affect different organs, truly everybody is different is how it presents.

Dr. Nativi: You're totally right. It's a combination of the multi-organ system. Also, the preference of the patient makes a significant role in how we're going to treat this patient and what we're going to offer.

Interviewer: There are some alternatives and you have to sit down and discuss those even.

Dr. Nativi: Totally. Clearly, the message is there are several options but it will depend on what are the characteristics of the patients, what are the organs affected.

We as a group, we discuss each case, all the members of the group because what happens is that sometimes, because the patient has different organs, they will go to different doctors and then they will get messages from different doctor, different provider. The kidney doctor would give him a message. The lung doctor would give him a message. The heart doctor would them a message. We try to avoid that so we discuss each case as a group and then even though the patient is seen by a lot of providers, there's only one plan that we all agree that will be the best care individualized for each patient.

Even though it's multi-disciplinary, it's one plan per patient.

Interviewer: Somebody would use their clinic in a couple ways. First of all, if they suspect that they may have this condition, you guys would actually diagnose it. Then, you will treat it as well.

Dr. Nativi: Yes, we provide comprehensive evaluation and then also, there are some patients that already have established diagnosis of amyloidosis and sometimes they have recurrence of their disease. Sometimes, they start with one organ, now they have three organs, the level of complexity is higher. Sometimes patients, they would like to see what is out there because not all centers of amyloidosis are enrolled in clinical trials or have the last medications and therapies for amyloidosis. Some patients are just curious to see what is new in amyloidosis.

We provide all of that counselling and we work very close together with their primary care doctors, with the other doctors that have treated the patient before. There's a close communication to see what has been the history, how the patient has been treated, and then we evaluate the current situation of the patient and try to provide the best advise that we have.

That includes the standard of care and also what new opportunities for research that we are offering.

Interviewer: You are involved in many clinical trials form what I understand.

Dr. Nativi: Yes, one of the clinical trials that we're very excited that we would like to share today is for patients with transthyretin amyloidosis. This is a clinical trial for medication that the medication will bind to the protein, will avoid the misfolding of the protein and will avoid the deposit of the protein in tissues.

This medication is already approved in Europe so it's not a total new medication that we're testing. It's already used for all the types of amyloidosis in Europe with very good profile, very good safety profile.

Now, we're going in United States in to all the clinical trials for FDA approval. All the patients with the diagnosis of transthyretin amyloidosis, we can go to ages up to 90 years old to role in this clinical trial, can be screened to participate in this study.

I think this is a good opportunity. We believe that medication is already working for all types of amyloidosis so the field belief that the chances that this is going to change the outcomes for patients for transthyretin amyloidosis is very high. We believe that this could be a very effective medication.

Other things about this trial is that old patients, when they completed the study, all the patients will receive the medication after the study if they complete it. This is very good for our patients with amyloidosis.

A lot of things going on for amyloidosis these days. A lot of new medications coming in the future. We'll be glad to review with the providers of the patients what options and what clinical trials we have open and available for them.

Interviewer: Where could somebody find more information about what you have as far as clinical trials at the center?

Dr. Nativi: A simple search of Utah amyloidosis will bring our webpage. It's Amyloidosis Program in Huntsman Cancer Institute and the University of Utah.

In our webpage, you will find several information about symptoms of amyloidosis, treatment options for amyloidosis, research, clinical trials that we're offering for amyloidosis, and also our support strategies, support groups that we're organizing for this condition.

Interviewer: Contact information if somebody wants to talk to you. I would imagine you would be more than happy to talk to a potential patient.

Dr. Nativi: Of course, our webpage includes our phone numbers, includes our email address, our webpage and just call the University of Utah or the Huntsman Cancer Institute asking for the Amyloidosis Program. A very simple question we're asking directly either to my name, Jose Nativi. I'm the Cardiovascular Director. There's Dr. Tibor Kovacsovics. He's the Hematology Director and we have Dr. Joe Abraham. She's a Nephrology Director of our center.

It's a multi-disciplinary program and we'll be more than happy to answer your questions. We receive a lot of those questions like, "I'm not sure if what type I have or I'm not sure if I should be getting something. Can you give me an opinion?" We're more than glad to guide you a little bit either by the phone, email or our webpage.

Then formally, we can do a more formal consult. We will be happy to take questions too and try to guide you through all of these common questions that come with patients with amyloidosis.