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One thing that bothers me are disease organizations that use the fear of the disease to raise money to treat the well. This happens when breast cancer organizations raise money to “raise awareness.” You know what? No one with breast cancer needs their awareness raised. Similar to this but more subtle is raising money to promote and pay for screening. Again this is using the fear of the disease to treat people who do not have the disease. to treat people more like the board members and employees of a charity that likely do not have the disease.

If I’m going to work for a disease charity, I want to work with a charity that helps people with the disease. This is true in my work for the NKF of Michigan (though I have noted a recent, and troubling trend away from this core mission).

When I looked into the Multiple Myeloma Research Foundation (MMRF), the benefactor of my current fund raising push for my trip to Everest Basecamp, one of the facts that stood out was the claim that the MMRF had been instrumental in bringing nine drugs to market for the treatment of multiple myeloma.

Nine.

I read this and I thought “bullshit!” That just too much. A charity would be delighted and lucky to have just one drug come to market in a decade. To have 9 hits in 20 years begs credulity.

Since that initial skepticism I have done some research, talked to scientists, and I am a believer.

The MMRF is an amazing organization that is doing charity and medical research right and deserves your dollars. Let’s reward a charity for saving lives and making a real difference rather than just getting football players to wear pink gloves for a month.

The origin story of MMRF is remarkable. Kathy Giutsi, at age 37, was a pharma executive on the fast track up the corporate latter. Then she was diagnosed with multiple myeloma. She made some pretty dramatic changes in her life (including going through IVF to have another baby!) and started the MMRF.

As a patient it isn’t surprising that Giutsi was focused on novel treatments and one of the first treatments she funded was Velcade. A drug that turned out to be particularly effective for her variety of myeloma. She was instrumental in funding the discovery and approval of the treatment for her own disease. It sounds like a Hollywood script. The MMRF was also instrumental in developing Revlimid the other breakthrough myeloma drug of the last twenty years.

I spoke with a myeloma scientist and he described how MMRF helps him. The MMRF acts as an interface between commercial pharma companies that have promising new drugs and myeloma doctors that have patients. When this scientist works with the MMRF he is able to write the protocol and design the trial. When he works with drug companies outside of the MMRF, he follows the protocol provided by industry. Talking to him it became clear that the MMRF valued independent, researcher-driven studies looking for the Truth rather than drug company trials that looked for FDA approval.

Another tenet of the MMRF is sharing research advances the field. While a lot of pharma research never goes beyond the corporate firewall, research done with MMRF money is shared widely and timely.

This is how you move science: empower individual scientists motivated by truth not profits. Share the discoveries quickly. Lubricate the wheels with money and social connections. The MMRF does it all because it is motivated to find a cure, not promote its own name, screen the healthy, or spread disease awareness.

Here is an article on the MMRF from the New Yorker in 2008.

2011 article on MMRF by Matthew Harper.

Join me in supporting the MMRF by donating here. All of the money goes to research, none of it goes to support my Nepalese Trek to Everest Basecamp.

Here is the post: KDIGO CKD-MBD Updated Guideline: The More We Know, The Less We Know

This is not the first time wrote about the KDIGO CKD-MBD guidelines. I wrote about them for Kidney News. I thought it was pretty good.

I am going to Mount Everest Basecamp with the Multiple Myeloma Research Foundation (please donate). They have a program called Moving Mountains for Multiple Myeloma. These are even driven fund raisers. They put together a team of patients, doctors, patient caregivers, and people climbing in memorial for someone they lost to multiple myeloma.

The trek to Everest basecamp starts at 4,500 feet in Kathmandu and ends at 18,192 in Everest Basecamp. The trek isn’t until next march but this past week-end the trekking team got together to meet and do some high altitude climbing around Colorado. We went to the top of Mt Democrat at 14,178 feet. This is the highest I have ever hiked.

One of the goals was to treat this Colorado trip as a shakedown trip. Try out all of the gear we will actually use on the trek to make sure it works. One of the pieces that needed to be tried out was acetazolamide, or Diamox, to prevent acute mountain sickness. The team has a few myeloma doctors and a plastic surgeon, but I am the only nephrologist. One of the participants singled me out and asked an interesting question. This trekker is on spironolactone for hypertension, and wanted to know if it was safe to combine spironolactone with acetazolamide. This made the hair on my neck stand up. Both drugs cause metabolic acidosis so that doesn’t seem like a good thing. Both drugs have an opposite effect on renal potassium handling, acetazolamide causes potassium wasting, spironolactone causes potassium retention. And lastly, one of the down sides of a diuretic during mountain trekking is preventing hypovolemia, as both insensible and sensible water losses are increased with activity and getting, purifying, and carrying enough water is a constant concern on these trips. All of this made me feel that spironolactone and aldactone were a bad combination.

I asked Twitter for their thoughts and as usual they did not disappoint:

Everest, Spironolactone, and Acetazolamide

The article the Edgar found was particularly interesting.

The article is worth a read. I made a visual abstract. It seems that spironolactone does not provide protection and may make people more susceptible to mild, acute mountain sickness.

He is a 57 year old man. Husband. Father. A bit over weight, nothing too extreme. He likes to play basketball. He drinks bourbon, an occasional scotch; he rarely over indulges. The more I learn about him, the more familiar he is. He looks like any one of my friends. He only found his way to my office after his family practice doctor got frustrated trying to control his blood pressure. Maybe it’s sleep apnea or too much salt in the diet. Sometimes I find a rare salt-retaining hormone abnormality.

On the first visit I did a routine urinalysis. It showed a hint of protein. When he came back, delighted with his improved blood pressures, I delved a little deeper and discovered the hint of protein was a lot more significant, with a strange ratio of albumin to protein. This is the pattern we see in myeloma. All of a sudden, the hemoglobin that looked like routine anemia yesterday is now the car crash I can’t turn away from. The arthritis he mentioned transforms in my mind into myeloma bone pain. 

I tell him what I’m thinking and the casual, good natured clinical encounters become heavier. I order the myeloma tests I learned about in medical school, the PEP brothers, SPEP and UPEP. I add on the plasma free light chains that the myeloma specialists perseverate on. 

A few days later I see the electronics flag indicating unviewed lab results.
Like Schrödinger’s cat in the box, at that moment he has myeloma and doesn’t have myeloma. 

Time for the ambiguity to end. Time to open up the box and look inside…

This bit of medical fiction was me trying to express why I’m raising money for multiple myeloma.

I am raising money for the Multiple Myeloma Foundation as part of their Moving Mountains for Myeloma program. The peak of this endeavor will be a trip to Mount Everest Basecamp. My role is to bring awareness of myeloma, I hope this helps give an impression of one small aspect of this devastating but increasingly treatable disease. Help myeloma research.

For years one of the fronts that social media advocates battled was the freedom to tweet at meetings. A number of meetings (we are looking at you ATC) were less than welcoming. I suspect many conferences were used to selling access to the meeting to people who did not participate through video tape, audio recordings or other means and they saw the social media coverage as unnecessary competition.

Why let bloggers and social media gadfly provide for free what we can sell.

Conferences are also typically run by people not on social media and who are unfamiliar with the norms of those communities. Organizers paraded excuses of academic purity and protecting authors. The issues are well documented here.

This all bubbled over last week at the American Diabetes Association national meeting in San Diego (#2017ADA). The organizers tried to enforce a no pictures policy:

One take down notice, lead to another, lead to another and suddenly the @AmDiabetesAssn feed was nothing but take down notices:

Linda Cann, the association’s senior vice president, was quoted by Liz Neporent, ” The association will be reevaluating the policy after the meeting is over”