ACR 2013 Hot Topics from, One Patient’s Perspective

January 31, 2014 in Patient Input

ACR 2013 Hot Topics, from One Patient’s Perspective

RPF member Melinda Hansen reports on what she learned recently at the American College of Rheumatology scientific meeting. Between posters, exhibits, and actual sessions, there are hundreds of interesting topics covered, and Melinda brings us a summary of several topics important to people living with Rheumatoid Disease.

Melinda HBy Melinda Hansen

So much to be learned at ACR! I attended talks on a wide range of subjects, from an overview of RA treatment in 2013, to safety issues with current therapies, to current osteoporosis management, to inflammatory eye disease, to use of medical marijuana. This is my own subjective view of some of the important issues from this year’s meeting.

“Words That Heal” by Ann Curzan

I had a lovely start to my first day, going to a talk not by a rheumatologist, but by a linguist. She discussed the importance of letting patients tell their stories, in their own words, at their own pace, and said that when the provider frequently interrupts or has eyes glued to a computer screen, patients do not feel they are being heard. She also noted that since the experience of pain is not objectively measurable, clinicians need to trust what patients tell them.

Patient centered research

The growing importance of patient-centered research was mentioned in a number of talks, which is due both to an increasing awareness that yes, the patient is a rather important part of the equation – but also because health care providers are increasingly being expected to demonstrate patient outcomes. This is great for patients, and this is an excellent time for RA patients to provide the patient point of view through greater involvement in research projects.

JAK inhibitors

JAK inhibitors – tofacitinib (Xeljanz) is the only drug in this class currently on the market – are important not because they are better than other drugs, but because they offer an alternative for people who do not get better on current therapies. There are safety issues, however, and the drug is not approved in Europe because of uncertainty about risks versus benefits. The search for new JAK inhibitors targeting different pathways, with fewer adverse responses, was a hot topic and an area in which there is a lot of current research.

Personalized medicine / individualization of treatment

The science of biological research and genetics/genomics is quite complex, but what I am understanding is that as the field of medical genetics continues to progress, it may in the future be possible to better match an individual’s biochemical makeup with the drug most likely to target and treat it.

Triple therapy versus biologic therapy

This topic got huge attention throughout the meeting because of a study presented which compared triple therapy, usually with hydroxychloroquine (Plaquenil), sulfasalazine, and methotrexate to biologic therapy, with a drug like etanercept, usually also given with methotrexate. The question: how to start treatment in a patient newly diagnosed with rheumatoid disease.

The speaker arguing for triple therapy said it is based on a “3-legged stool of value” of efficacy, toxicity (more infections with biologics, for example), and cost; the speaker from Sweden argued that physicians should be look at clinical outcomes, not cost; the speaker from the U.S. counter-argued that that he is living in a dream world! It was a lively discussion.

Other issues with triple therapy were discussed. The biologics are known to have a rapid onset of action, leading to patients obtaining results more quickly. Starting two or more drugs at once means not knowing what is causing any adverse effects that might occur, but when starting step-wise, one at a time, there can be many months of delay, since the triple therapy drugs are often much slower in onset that the biologics.


Newer diagnostic testing

Traditional RA blood tests can be normal even with active RA This causes problems with diagnosis and treatment decisions. The hope is that newer tests such as the Vectra DA (and others being studied), by looking at a much wider range of biomarkers, can provide a better way to monitor disease activity and possibly help guide therapy selection. Vectra representatives emphasized that their test is not meant to be used for initial diagnosis.

Enbrel storage

New information from the makers of Enbrel: although refrigerator storage should still be “standard practice”, Enbrel can be stored at a moderate (but not hot) room temperature for up to 14 days. This is great news when trying to keep the drug cool while traveling. Of course, everyone should check with her / his pharmacist.


For reasons related to the complexity of biologic drugs, there will not be generic copies, but “biosimilars” for the RA biologic drugs: not identical to the original, but thought to possess the same properties and effects. A biosimilar for the RA drug Infliximab (Remicade) has been approved in Europe, but not yet in the United States. Most seem to think that the biosimilars may make the biologic drugs more affordable, (although this may be less than hoped, especially in this country) but that they will need to be used carefully, with close monitoring for any changes in clinical outcome.

How research studies look at response to treatment

The traditional way to evaluate response to treatment looks at what is called ACR20, ACR50, and ACR70, which means symptoms are 20%, 50% or 70% better. I was happy to see that more researchers are looking at 50% and above, together with clinical symptoms. Although there are days when I would be glad to feel even 20% better, it seems a weak measure of clinical improvement, given that for many of us, our symptoms can vary greatly, even without medication.

To read more on Melinda’s experiences at ACR – click here.