August 2011 Archives : Myeloma Voices
I have just returned from the IMF's visit in China where there are more myeloma patients than anywhere else in the world. It is with this in mind that the IMF has established the Asian Myeloma Network, to address the growing incidence in one of the world's most densely populated regions.
Upon our arrival in Beijing, we met with Professor Wenming Chen and co-hosted a two-day seminar for 180 of the top myeloma doctors in and around China. This was an emotional and exciting meeting. In typical Chinese fashion, during the opening session, when I presented an overview of current IMWG guidelines for myeloma, a large metal stand was constructed outside to take a panoramic picture of all attendees.
After the photo-op, we regrouped and I conducted an interactive session on bone disease diagnosis and management. This opened the discussion of what resources are currently available across China. I learned that while there are two or three centers capable of administering most of the treatments available in the West, most facilities were not as well-equipped. Velcadeï¿½ and a local Chinese brand of thalidomide are both available, but Revlimid is not yet approved in China, and autotransplant is feasible only at a few centers.
After lunch, we set off across Beijing. Dense, brown smog settled over the city as we made our way to participate in a meeting of the "China Myeloma Patient Club"- an over 1500 patient-strong Chinese support group. With some trepidation we entered a hot (~90F), humid room where around 40-50 patients had gathered to get answers to prepared questions presented in slide fashion. This was an extraordinary scene with patients sitting around crowded tables eating sunflower seeds awaiting answers about how best to prevent or cope with treatment related neuropathy and a range of other issues.
The questions of pressing concern to these patients were similar to ones asked at the recent IMF Support Group Leaders Summit in Dallas: Should they have a transplant? How about maintenance? After about an hour and a half, the meeting evolved into a "free-for-all" as patients approached all f us for answers, truly desperate for advice and comfort. The need for a presence like the IMF in this environment was apparent.
We then met the local nursing team and junior physicians working at this western Beijing Hospital. The genuine commitment to myeloma patient care was truly extraordinary. We pondered the events of the day as we tried to cool down on our long trek back across the city. What would be next?
That evening, Susie and I were asked to speak at a gala dinner, during which we took the opportunity to thank our host and congratulate the 11 founding members of the Chinese division of the IMWG. Day one in Beijing offered us a glimpse into the enthusiastic commitment to this first broad myeloma educational initiative in China.
The next day we met with the representative of the Chinese Health Promotion Foundation (CHPF), with whom we entered into a collaborative agreement earlier this year. We learned of an opportunity to submit a grant request for approximately $200,000 to support educational initiatives for 2012, which we submitted immediately upon our return to the States. We are very excited for the chance to further the IMF's mission to promote patient education and awareness in China.
We then headed off to Shanghai, home to 30 million people. We were introduced to Professor Jian Hou at the First Military Hospital. This hospital includes a transplant unit plus inpatient and outpatient services, and there is an off-site university translational research center with molecular biology laboratories where the group has conducted GEP, FISH, SNP and other "state of the art" molecular/genetic research projects. After touring the facilities I gave a lecture to about 60 Shanghai hematologists on "The Search for a Cure," which created considerable discussion both about past accomplishments and future possibilities. There was clearly great potential for cutting-edge research in Shanghai. Prof. Hou is the principal investigator for the "bridging study" which will lead to Revlimid approval in China, hopefully by 2013.
The day again culminated in a gala dinner. In this case, our visit coincided with a local celebration: the appointment of two young women doctors in the department to the Associate Professor level, which is a very important achievement. The President of the Chinese Hematology Society attended and quipped that "he had to wait for US visitors to get an invitation to a proper dinner at a top Chinese restaurant." It was a special evening of celebration and the start of ongoing collaborations. A meeting is planned for May 2012 in Shanghai, both to convene the Asian Myeloma Network investigators and initiate a series of preceptorship programs in China.After an exhausting few days we collapsed into bed to awake ready for the trip home. China is indeed the new frontier with both incredible needs and incredible opportunities. It will be exciting to see the fruits of the next few years as the IMF seeks to facilitate outreach to physicians and patients throughout China. The search for the cure will certainly be ongoing in several expanding myeloma research groups across the country.
Ever since Carfilzomib, made by ONYX Pharmaceuticals, began progressing through the clinical trials process from Phase I forward, it has been a regular topic of interest on the IMF Hotline. The recent announcement that Carfilzomib is being made available to eligible patients through an early-access program has attracted a lot of people's attention. Until a few days ago, Carfilzomib was a drug in Phase III clinical trials not expected to be approved for at least another six months to a year.
For those who are unsure what Carfilzomib is, it's a late-stage, selective next-generation proteasome inhibitor. It is being studied as a single-agent treatment and in conjunction with REVLIMID. At the recent International Myeloma Workshop in Paris, we noted that in multiple clinical studies carfilzomib has a "positive efficacy signal" with an encouraging safety profile, including low rates of neuropathy.
The results obtained with Carfilzomib during this expanded access program will be available to support the approval of the drug for prescription use. The data will be compared to findings in a new, recently published, IMF study, which provides a benchmark for patients with relapse/ refractory myeloma. This study clearly demonstrates the need for more new drugs to treat myeloma.If you have any questions about this new development, the IMF's toll-free Hotline (800-452-2873) is available to help you understand the eligibility requirements and provide contact information for the early access program. This program may have opened a new door for patients that have exhausted all other options, but it isn't necessarily the best course of treatment for everyone. I urge any patient who is interested in getting into this early access program to discuss it with their own doctor before making any decisions.