Newsletter

29.11.11 / Uncertainties about drug holidays

One of the great debates is how long is long enough for treatment. This debate is fueled by a number of things we just do not know yet. 

1) We don't know exactly how much of the benefit stays after a bisphosphonate has been stopped. Researchers believe there is continuing advantage from the drug for a few years.

2) We aren't sure exactly how long the drug benefit lasts in different kinds of bones – particularly the hip and the spine bones. Patients who were on a treatment for five years and off for five years did about as well as those staying on treatment for the entire ten years.

3) We aren't clear about when to restart an osteoporosis treatment after a drug holiday.

To help with these uncertainties, doctors are measuring bone metabolism with blood tests called bone turnover markers. As long as the results of the bone markers are low, it is logical that the drug is still having an effect in reducing fracture risk. The research on one bisphosphonate (alendronate) shows that the markers can stay low for 6-12 months after stopping treatment, but research into other osteoporosis drugs shows much shorter continued benefit after stopping. The carry-over effect depends on how long the drug remains in the bone and how much of it is released from bone back into the blood stream and eliminated from the body.

29.11.11 / What we know about bone drug risks and benefits

There are definite benefits to osteoporosis drugs. People who take osteoporosis drugs, regularly and correctly, reduce their risk of having a fracture by about one-third. This is particularly true in patients who are at high risk for having a fracture or who have very low bone density. For people at low risk, fracture protection is not well proven.

There are rare harms that can occur with long-term use of osteoporosis drugs. Estimates are that for each year of use about 1 of every 1,000 patients who take osteoporosis drugs has a harmful side effect. The risk of harm appears to increase the longer a patient stays on the drug, particularly after 4 to 5 years. We will focus on two harmful effects that have received a lot of news coverage recently.

Atypical fracture: One of the harmful effects is a tendency for patients to suffer a fracture, right in the middle of the long thighbone --- with hardly any injury. Many patients who have had these fractures report a deep, aching pain in the middle of the thigh several weeks to months before that bone breaks. The ache is not joint pain and not related to exertion or physical activity.

Osteonecrosis of the jaw: The other harmful effect is a condition where the bones that support the teeth break down and don't heal--- the medical term is osteonecrosis of the jaw (ONJ). ONJ usually occurs after dental procedures like implants or extractions and has been linked to high dosage bisphosphonates used in patients with cancer. ONJ tends to happen in patients who have poor dental health.

Both these harmful conditions are rare — about 1 in 1,000 osteoporosis drug users each year. This is a 0.001% chance and would be similar to reaching into a bag of 999 red balls and pulling out the one blue ball. For people at high risk of fracture, the chance of benefiting from the treatment is many times greater than the harm. Treatment will reduce the risk of a fracture.

29.11.11 / Weighing your risks and benefits

Learn your fracture risk and then complete the chart. This information will help you and your doctor determine whether or not you should be on a treatment that will help prevent fractures.

For some people, it may be more risky to stop taking the drug than staying on it.

Always remember, there are other important prevention strategies to keep your bones strong.

Here is a complete BONESENSE on drug holidays, including this worksheet!

26.10.11 / Binational Health Week 2011

This year, the eleventh Binational Health Week (BHW) took place October 1‐16, 2011 in at least 40 U.S. states and 3 Canadian provinces, with the participation of the consular networks of Mexico, Guatemala, El Salvador, Honduras, Colombia, Bolivia, Dominican Republic, Ecuador and Peru. Additionally, during BHW national campaigns will be implemented to promote awareness among the underserved Latino community. Stay tuned for results from 2011 activities.

Results from Binational Health Week 2010

Last year, the events took place from October 4-15, 2010. An estimated 3,973 activities were held benefiting 734,657 people, not to mention the millions of people who received health information through the press from the 510 media reviews of the event. The organization of the event involved the participation of 10,133 agencies and 15,877 volunteers, which were led by 150 consulates working together with 178 planning committees.

For more information on Binational Health Week.

26.10.11 / Community programs increase awareness of osteoporosis and bone health

When the Senior Support Group received a visit from American Bone Health staff to educate Latino elders and their caregivers about osteoporosis, the audience was pleased with this opportunity. For most, this was the first time to learn about bone health and have a bone density screening. It is "never too late to check my bones for the first time," said Maria, a 78-year-old woman who is mother to twenty sons and daughters. To the surprise of the group she was not one of the ones at risk after the screening. Juana, a 66-year-old woman with eight children, expressed her surprise, "Why am I at high risk? I don't have many children like Maria . . . . Now I know that I need to take care of my bones."

In communities where Latino elders have limited access to health education, information, and orientation to using the health care system, support groups create a space for them to learn. A support group provides the opportunity for organizations like American Bone Health and other professional providers to help underserved people get access to education and health screenings. Many Latino elders like Juan and Jose and their caregivers share this new experience, saying, "I was thinking that doctors will take some piece of my bone and that it will be a painful and traumatic test-screening, but it was very simple, not painful, so I know that I need to take care of myself, pay attention to my daily diet and tell my daughters and granddaughters that they need to have screenings."

"Delivering the message around the community is the key. They changed their view and learned that they can practice prevention of this silent disease called osteoporosis," says Mr. Carlos Torres, coordinator of the Latino education and outreach programs of Jewish Family and Children's Services (JFCS) of the East Bay.

As part of the health education program, Latino elders and their caregivers learn that one out of two women and one out of eight men over fifty will suffer a fracture because of osteoporosis. The good news is that it is possible to prevent and treat bone loss and osteoporosis. If we take action today, we can improve bone health for a lifetime. Collaborating with Jewish Family and Children's Service's culturally and linguistically appropriate local programs, we are reaching underserved and disadvantaged Latino communities. Carlos Torres, JFCS staff and a member of the American Bone Health speaker's bureau, hopes that "other health providers will be aware that education, information and follow-up, especially with those who have limited English speaking skills, are necessary to prevent accidents and promote awareness about bone health in aging people, and to help achieve a better quality of life for underserved elders."

26.10.11 / Latino program improves bone health actions

The ¡Huesos Fuertes Ahora! (Strong Bones Now!) program is a collaborative of community-based organizations that have created a linked and coordinated continuum of culturally competent, accessible services to increase the prevention, identification and treatment of osteoporosis among older Latinos. The partners include the Foundation for Osteoporosis Research and Education, American Bone Health, La Clínica de la Raza, California Hispanic Osteoporosis Foundation and Latino Consultants. Nearly 1,600 older Latinos were screened and 45% of them qualified to enter the program based on their screening results.

The organizations work together to provide ¡Huesos Fuertes Ahora! with expertise in the areas of facilitation, social marketing, osteoporosis prevention, detection and treatment, culturally appropriate clinical services and health education - all working together to fill a critical gap in health care services for older Latinos. The continuum includes outreach and awareness activities, screening events, clinical follow-up and patient support.

Spanish language social marketing through radio, bus shelter posters, and flyers welcomed Latinos aged 50 and over to receive an initial bone density screening of their wrist (peripheral DXA) at outreach events. All screening participants receive education about their screening results and strategies for strengthening and maintaining healthy bones from peer educators called promotores. The promotores receive eight hours of training on osteoporosis prevention, detection and treatment to prepare them to interact with participants at the events.

Latinos who were identified through the screening as "at-risk" for osteoporosis (defined as T-score of -2.0 or lower) were referred to a La Clínica community clinic where they would get clinical follow-up, that included a hip and spine scan (central DXA), and an appointment with a medical provider and a clinical health educator. Home visits and group classes were also part of the patient support offered by the program.

An external evaluation by Professional Evaluation Group from October 2008 through June 2010 (Year 3 data is current being analyzed) collected quantitative and qualitative data from program stakeholders.

Highlights of the program evaluation

Educating Latinos in Contra Costa County about osteoporosis

• The ¡Huesos Fuertes Ahora! program increased knowledge about osteoporosis among La Clínica's administrative, medical and community health staff through multiple trainings, substantially improving their ability to address the bone health needs of their Latino patients.

• The bilingual social marketing campaign resulted in over 6 million media impressions over two program years. The multimedia approach includes a web site, public service announcements, radio/television advertising and broadcasts, promotional posters and fliers – and featured celebrity spokeswoman Dr. Aliza Lifshitz, a respected physician well known in the Latino community.

• Culturally-appropriate materials provide program participants with a bilingual resource for maintaining healthy bones and a roadmap to educate participants on how to follow the program's continuum of care. Extensive field-tests with a sample of the target population verified that the program's educational materials were well liked, useful, easy to understand and informative. In a telephone interview, one program participant told the interviewer, "I still have [the brochure] and check from time to time when I want to remember about what I should be eating and doing".

• La Clínica's Promotores (community health educators) received specialized training to qualify them as bone health educators at program screening events and in their communities. Their growth in terms of confidence, knowledge of osteoporosis and managing logistics at the screening events was a noteworthy program success.

• In the program's second year, more than 90% of screening participants surveyed felt they learned something new about osteoporosis at the event. Pre and post tests indicated an increased understanding of what the term osteoporosis means (66% to 90%) and that osteoporosis is not a normal part of the aging process (31% to 62%). Participants also demonstrated an increased ability to identify critical components of bone health (calcium, vitamin D and exercise) after their results and education.

Providing access to bone density screenings and follow-up care to at-risk older Latinos

• The program implemented a successful campaign to screen older Latinos for low bone density and inform them of their bone health status. 1,564 Latino seniors were screened through 50 outreach events over two years.

• 45% of Latino seniors screened were considered "at-risk" for osteoporosis. This finding supports the growing body of research that indicates osteoporosis is a serious threat for Latinos. One screening participant shared her feelings about her results, "I have a moderate problem. I need to do something because I want to stay healthy".

• Many participants noted the free services as a key benefit of the program. One woman explained, "My husband is already retired and money is a problem for us. For this reason I think the program was very important for us".

• In-depth interviews with participants who went through the whole continuum of care highlighted the benefits of participation. Compared to participants who only went through the initial screening, the full continuum group was more knowledgeable, compliant and passionate about keeping their bones healthy.

Compliance with Treatment Recommendations

• Calcium consumption among screening participants with low bone density rose dramatically, from 34% who took a daily supplement before their screening to 71% one year later (n=122). Of those taking calcium, 77% knew that their calcium supplement contained vitamin D.

• Though not many in the sample had been prescribed pharmaceutical bone medication (n=16), more than 90% of these seniors filled their prescriptions, and one year later, 81% were still taking their medication as prescribed.

• Since the screening event and the education received there, 21% said they had increased the amount of calcium in their diet. Reports of physical activity were equally positive, with 83% of survey respondents reporting physical activity three or more times per week and 14% saying they increased their activity level since the bone density test.

Quote from a ¡Huesos Fuertes Ahora! Program Participant

"I was really lucky to have had the opportunity to learn about osteoporosis. My mother died from a fracture and we didn´t know she had it. Now I can do many things to take care of myself. I think I am more active now, I walk for one hour every day. I feel good! My daughter has come with me to everything, she also has learned. She brings food to our house and now she buys better food."

30.08.11 / PARS Awareness - Nia’s Story

Four years ago I was an eighth grader at Mildred E. Strang Middle School in Yorktown Heights, New York. At thirteen years old I was an avid athlete. I held every track record for the school, both boy's and girl's, and was playing basketball with the top high school and even collegiate players in the area. I pushed myself to and past my limits every day, never giving myself a break. By the spring of that year my body was breaking down and during one basketball game it snapped (literally).

My team was down six with seven minutes left in the second half when I pulled down a rebound. I jumped up for the ball but when I landed I felt something snap- pop- break. I tried running up the court but every step I took sent a searing pain from my lower back down into my leg. It was the first time I had ever cried on the court. My coach took me out right away. The trainer rushed to our bench; he told me to stretch and put heat on my back. He believed I had pulled a muscle. But as I was carried to my car and sent to the emergency room later that night, I realized there was no way this was a pulled muscle. I had broken bones in the past: both my wrists, a couple of fingers, but never had the pain been this bad. I prayed it was nothing serious.

The doctor initially found nothing seriously wrong, and ordered a month of no exercise. A month later, I returned to the season loaded up on painkillers and Bengay, the same searing pain running down my leg. I played one of my best games that year but can hardly remember it; I was in too much pain. My father took me to more and more doctors, trying to figure out what was wrong, but they all said the same thing: that they couldn't find anything and that I should probably just get weekly massages until the pain subsided. But it didn't. Finally, a doctor informed us that I had an inoperable tumor in my spinal canal that was the cause of all my pain. The doctor told me there was nothing he could do, that the worst-case scenario would be paralysis. My father refused to believe it and took me to yet more doctors, who all told us the same thing. They told me that unless I became paralyzed, I could continue to play as long as I could deal with the pain, that I couldn't make the condition worse. So I kept pushing through it.

That summer was one of the most painful for me. I woke up and played basketball every day, with my friends, with my teammates, but the pain never went away and I began dreading having to even walk. There were days when the pain was tolerable and days I couldn't get out of bed. I had to give up soccer because it was too painful to kick the ball; I had to give up running. All I had left was basketball and even that made me cry. Fall soon came. I was entering my first year of high school, and all I dreamt about was making the high school basketball team before it was too late. I woke up every morning to practice by myself, getting ready for tryouts. Finally the week in November came. Tryouts for the '07-'08 varsity basketball season began and I was planning to make it as a freshman, as proof to everybody that a five foot white girl could compete with the best and to prove to myself that I could get through this pain. But as the weeks went on, things only got worse. The pain became intolerable, but I had no choice but to play.

When the coach talked to me after the week of tryouts and told me I had made the team I was ecstatic, and the pain subsided. But with our first Saturday morning practice it resurfaced. A week later my dad got a phone call at work from me, telling him that I hadn't been able to walk down the stairs. We went to one last doctor who had me take one last MRI. That night the doctor called our house with the results. He told us he had "good news" for us: the previous findings had been incorrect. I did have a large cyst in my back, but it was completely benign and not causing my problems. However, it had been obscuring the actual underlying cause of my pain: I had had two broken vertebral bones in my back all along, apparently due to my low bone density.

Shortly thereafter I was fitted for a full body cast and then ordered to 2 months of absolutely no activity. After this confinement I returned to sports. A year passed and I felt fully recovered, but something was still wrong. July 2009 I was rushed back to the hospital after collapsing on the court. After an injection of morphine and another MRI I heard devastating news: because of the false diagnosis and the many months playing with a broken back the two bones had not been able to heal properly. They had healed with fibrous cartilage rather than with bone and thus continuing to play basketball had put too much stress on the fracture site, and the bones re-broke. The doctors claimed there was nothing they could do unless I was willing to consider surgery.

I began the 2009-2010 school year at the Hackley School in Tarrytown, New York: with dreams of a new, pain-free start and a chance to get the years back physically that I had lost. However, on completing the soccer season and half of the basketball season the pain became too great. The surgery was scheduled and I began to mentally prepare for three months of rehab.

It has been a long road back: months in a body cast, even longer in physical therapy, a week in the hospital and now over two months of rehab, all in the hopes of getting back to the physical state in which I had once been, all in hope of doing the one thing that makes me happy, and that used to be my entire life: basketball. What gets me most is that all of this pain, delay and recovery time – torture really -- could have been prevented. When you take a look at the athletic careers of today's youth, you see more and more athletes in my situation: a pars fracture related to over work and over stress. It is my dream to spread awareness of this condition, to stress the importance of taking care of ones body. I want to spread awareness on the importance of healthy bones so that no other athlete has to go through what I did.

30.08.11 / Teen runners may be risking long term bone health

A study published in June 2011 (Med Sci Sports Exerc. 2011 Jun;43(6):959-66) reported that female teen runners may not be able to recover from low bone density – underscoring the concern about Athletic Energy Deficit in female athletes. 

In the study, Michelle Barrack and her colleagues in the Graduate Group in Nutritional Biology at the University of California Davis followed 40 teenage long distance runners for three years. They set out to investigate if young female runners starting with low bone mass continue to have low bone mass as they age, putting them at risk of a low peak bone mineral density in adulthood compared with girls who had normal bone mass for their age. The girls averaged about 16 years old when they were recruited and evaluated on a number of factors. Three years later, the researchers measured the girls to determine if any of the factors were associated with long-term changes in bone density.

The researchers collected a number of baseline measurements including menstrual status, amount of training and participation in sports. The girls were grouped by bone mass for age as measured by dual energy x-ray absorptiometry (DXA).

At the follow-up visit, runners gained a slight amount of height, weight, BMI and percent of body fat (0.9 cm ±0.2 cm, 4.7 kg ±0.7 kg, 1.5kg/m2 ±0.2 kg/m2, and 5.6% ±0.6% respectively). There was slight improvement in the prevalence of irregular menstrual cycles from 28.2% and 25.6%. Most notably, 87% of participants with low bone mass (BMD) at baseline had low BMD at follow-up in all of the skeletal sites.

The researchers found that a number of the factors they examined (the amount of training, menstrual function, age, developmental stage, and change in body mass) explained the variability in bone mass between the girls with low bone mass compared to the girls with normal bone mass for their age. They also noted that the girls who started with low bone density mature later and have lower bone mineral content as well as lower bone density.

They concluded that "it appears as though female adolescent runners with low bone mass are more likely to have low BMD after a 3 year follow-up. Thus, "catch-up" growth from adolescence to adulthood does not necessarily occur." 

This finding underscores the importance of the bone building years around puberty (age 9-14) and particularly in young female athletes. Adequate and appropriate nutrition, particularly a diet with calcium and vitamin D, are critical during these years. Girls who do not have a regular menstrual cycle are likely to have Athletic Energy Deficit and may be putting their long term bone heath at considerable risk.