Does the Heart Transplant Allocation Process Discriminate Against HCM Patients?

A recent article by doctors from the University of Utah Health Sciences Center found that patients with HCM who are in need of heart transplantation may wait longer for a new heart than patients with other cardiomyopathies.  Additionally, HCM patients may experience stroke or other adverse consequences while awaiting transplant.

The discrepancy is attributable, in part, to the fact that HCM patients are not often candidates for LVADs (left ventricular assist devices) and other types of mechanical circulatory support devices which are used to bridge patients awaiting transplant.

Hence, the article argues, United Network for Organ Sharing (UNOS -the organization responsible for the allocation of donor organs in the U.S.) should take these factors into consideration as it revises its system of heart allocation for patients awaiting transplant.

On a positive note, the article points out that long-term survival in HCM patients has improved over time, and HCM patients now do as well or better following transplant  than patients who have been transplanted for other types of cardiomyopathy.

A Close Look at Alcohol Septal Ablation and Mitra-Clip for HOCM

This recent article by Dr. Srihari Naidu of New York’s Westchester Medical Center uses great detail in describing the technique used to perform alcohol septal ablation in treating obstructive HCM.

The article also describes what is involved with the newer, experimental Mitra-Clip procedure, and discusses appropriate patient selection for both procedures.

Medtronic ICD Advisory Expanded

The January recall of 48 Medtronic CRT-D and ICDs has now been expanded to include 752 additional devices at lower risk than those involved in the January recall,.  There is an issue that occurred during the manufacturing process of these devices which could result in an unexpected loss of device functionality.  If you have one of these devices, you should contact your doctor to discuss next steps.

You can see the advisory here.

To look up your device by product name, model or serial number to see whether it is impacted, click here.

The box in the upper right corner labeled “Advisories For This Model” will tell you if there are any advisories for your device.

If you are affected, the search page would look like this:

Hugo MDT

This example shows that currently there are no advisories for my model.

Protecta MDT page

As always, you can call Medtronic Patient Services with any questions at: (800) 551-5544 (M – F, 8am – 5pm Central)

 

 

Limited Recall of Medtronic ICDs and CRT Devices

Medtronic has recalled a small number of ICDs and CRT-D devices.  A total of 48 devices implanted in patients may contain a manufacturing defect which would prevent the device from delivering an appropriate shock if needed.

This is a Class I recall, which is the most serious as determined by the FDA.

Physicians of record of those affected by the recall should have already been notified by Medtronic.  

You can find a list of affected devices and serial numbers here.

You can also contact Medtronic Patient Services at 800-551-5544 (Monday-Friday, 8am-5pm Central Time).

Continuing Genetic Counseling Helpful for Silent HCM Gene Carriers

An article entitled Psychosocial Impact of a Positive Gene Result for Asymptomatic Relatives at Risk of Hypertrophic Cardiomyopathy was published in this week’s Journal for Genetic Counseling.

The article focuses on the motivation for and the impact of HCM genetic testing on family members.  The 32 participants in the study all encouraged family members to undergo genetic testing with the hope that the knowledge gained would benefit family members down the line.  However, the study found that the psychological impact of a positive result, in the absence of overt disease, was highly variable. Some gene positive individuals perceived that they had an absolute risk of developing HCM, with substantial detriment to their lifestyle choices, while others were not at all affected by the result and made no lifestyle changes.

Continue reading “Continuing Genetic Counseling Helpful for Silent HCM Gene Carriers”

HCM Patients with Scarring More Likely to Have Genetic Mutations

A recent Japanese study found that HCM patients who demonstrated late gadolinium enhancement (LGE) on MRI (which is indicative of myocardial scarring) were more likely to carry a genetic mutation associated with HCM than others who did not show LGE.

Can Fitness Tracker Biometrics Spot HOCM?

MyoKardia, a San Francisco biotech company currently in clinical trials on a HCM drug called Mavacamten, has come up with a way to spot HOCM simply by using a wristband fitness monitor. The wristband works through the use of optical biosensors which monitor arterial pulse waves.  

During MyoKardia’s trials, the bracelet biosensors were used on HOCM patients and non-affected controls.  The algorithm was able to distinguish HOCM patients from unaffected individuals more than 95% of the time, suggesting that a non-invasive way to screen for HOCM may not be too far in the future.

The linked article at Medgadget contains an interview with MyoKardia’s Dr. Robert McDowell, MyoKardia’s Chief Scientific Officer, and Dr. Eric Green, MyoKardia’s Senior Director of Translational Research with more on the happenings at MyoKardia.

 

Australian Summary of Standards for HCM Diagnosis and Management

A summary of current standards for the proper diagnosis and management of patients with hypertrophic cardiomyopathy was recently published by Australian HCM doctor Chris Semsarian in the journal Heart, Lung and Circulation.

Newest HCM Research Focuses on Exercise

Two articles published this week highlight how attitudes relating to exercise and HCM have changed in recent years.  Older recommendations that HCM patients should refrain from exercise appear to be outdated.

The first article, an editorial published in Circulation by Drs. Sara Saberi and Sharlene Day from the University of Michigan’s HCM Center, reviews the statistics relating to sudden death of athletes and questions the long held notion that participation in vigorous activity or competitive sports is dangerous in HCM.  This editorial also points out that moderate exercise is the only non-surgical intervention proven to increase exercise capacity in patients with HCM.

See this HCMBeat interview with Drs. Saberi and Day for more details about their groundbreaking study.

A second article from researchers in Australia used the number of a patient’s steps per day as an indicator of HCM disease severity and the patient’s functional limitations.

It seems that the time has come for HCM patients to get up off their couches and get moving!

Are HCM Kids With MYH7 Gene at Increased Risk?

A recent Canadian study found that children with HCM who carry a single mutation in the MYH7 gene or who have multiple HCM-causative genetic mutations are at increased risk of major adverse cardiac events when compared to children who carry a single mutation in another gene.

Of the 98 gene positive children in this study, those with a MYH7 mutation or those with multiple mutations were more likely to need a myectomy or an ICD or to experience a sudden cardiac arrest or a heart transplant when compared to children with other HCM causative mutations.

The article also suggests that current screening protocols which recommend clinical and genetic screening for HCM beginning at age 12 may be insufficient.