Archive for Tools for Activists
Clinical Trials That Exclude Gay and Lesbian Patients
Posted by: | CommentsThe March 18, 2010 issue of *New England Journal of Medicine* (Volume 362, #11,
March 18) includes a study: “Clinical Trials That Explicitly Exclude
Gay and Lesbian Patients.”
The authors are Brian L. Egleston, Ph.D., Roland L. Dunbrack, Jr.,
Ph.D., & Michael J. Hall, M.D.
Here’s how the report starts: “We recently encountered proposed studies
that explicitly excluded persons in same-sex relationships. We
therefore decided to gather data on clinical trials to see whether this
phenomenon is common. We performed exploratory searches of the
ClinicalTrials.gov database1 to identify categories of studies from
which lesbians and gay men were likely to be explicitly excluded.”
Here’s another excerpt: “We sought explicit inclusion and exclusion
criteria that would restrict trials to heterosexual patients, such as
study requirements that participants be in heterosexual relationships.
We included only studies with sites in the United States.”
Here’s how the report ends: “Our results indicate that exclusion of
lesbians and gay men from clinical trials in the United States is not
uncommon, particularly in studies with sexual function as an end point.
It is likely that most gay and lesbian patients are unaware that their
sexual orientation is being used as a screening factor for participation
in clinical trials. Researchers should be held to careful scientific
reasoning when they develop exclusion criteria that are based on sexual
orientation.”
Malecare Testimony at Congressional Prostate Cancer Hearing
Posted by: | CommentsTo: The House Committee on Oversight and Government Reform
Re: “Prostate Cancer: New Questions About Screening and Treatment”
March 4, 2010
We wish to thank the Committee for allowing us to present four important issues, on behalf of the thousands of men, their loved ones and their families, whom Malecare serves.
Founded in 1998, Malecare is our country’s first and leading Gay men’s cancer survivor support group and advocacy national nonprofit organization. All who work for Malecare are volunteers. Malecare publishes the worlds’ largest multi-lingual prostate cancer focused website, malecare.org and several online support groups. Read More→
KEYS TO A SUCCESSFUL CONGRESSIONAL VISIT
Posted by: | CommentsKEYS TO A SUCCESSFUL CONGRESSIONAL VISIT
“WHAT TO EXPECT, WHAT TO DO AND NOT DO”
1. Have a message. Know what you want and be prepared to ask. Hill meetings can be quite short so it’s key to get to the point and make your point clear and concisely.
2. Meetings on the Hill can and will take place anywhere – in a Senator or Member’s office, in a committee hearing room, in the hall or in the reception area – don’t be surprised.
3. Expect interruptions, tardiness, canceled and rescheduled visits. Expect mistakes in scheduling, bells ringing, early departures and changes with whom you were expected to meet.
4. Visits should be scheduled with sufficient time to account for late meetings, to allow time to get from one place to another and you should expect down-time between meetings.
5. Dress professionally or in attire that reflects your affiliation with a larger group.
6. Your meeting should be planned to last no longer than 15 minutes – you may have the opportunity to go longer or you may be allotted less time.
7. Make your most important points clearly, succinctly and specifically.
8. Be interesting, informative and political. Relate your story and why the issue is important to you and other constituents like you.
9. Be honest, candid and relaxed. Use a conversational tone in your presentation – don’t be defensive or argumentative.
10. Expect a neutral reaction – Senator, Members and staff are rarely in the position to make firm commitments. A favorable response is a commitment to “do the best possible.” A more likely response is “we will consider your position”. Don’t be surprised by the lack of interest or negative response.
11. Don’t respond by being argumentative to a negative reaction.
12. Express appreciation to the person you are visiting for the time spent and the opportunity to present your case.
13. Remember, be prepared and equipped to state the reason for your visit: if you want action taken what action, and when or for whom, and why.
Have Fun and Good Luck!
Worlds First Twitter Prostate Cancer Chat
Posted by: | CommentsTwitter’s first Prostate Cancer Survivor Chat will be held on Thursday, July 16 from 4-5:30PM Join the discussion with hashtag #pcachat It will be facilitated by Malecare Prostate Cancer Support. Please follow me @prostatenews or http://www.twitter.com/prostatenews to stay in touch on this new event.
The worlds first twitter cancer survivor support group was held, today, July 9, as a collaboration of Malecare and Out With Cancer. It was actually quite interesting. One participant summed it up by tweeting, “This has been weirdly therapeutic. I feel odd sharing so much, but it feels necessary.”
We know that most of you have heard of Twitter, but may not have an account. Twitter is free, easy to use and, as we have seen with today’s cancer survivor support group, could well be life enhancing for our prostate cancer community. So, please join us! Simply sign up at twitter.com
As always, please feel encouraged to contact me, directly, if you have any questions. darryl@malecare.com
Darryl
Darryl Mitteldorf
Prostate Cancer Petition Still Active — Still time to Sign!
Posted by: | CommentsOver 15,000 people signed our community’s petition to Make Prostate Cancer a National Priority at http://www.prostatecancerpetition.org . We were ready to deliver the petition to the new Secretary of HHS when Mr. Daschle withdrew from consideration. Now, we await the next Secretary and our new appointment to meet him/her. Until then, we continue to collect signatures. Have you signed? Most all of our national prostate cancer survivor and advocacy community’s nonprofits are supporting this effort. Please help with a minute of your time to sign, and another minute to let your friends and family know about our effort. Thanks. http://www.prostatecancerpetition.org All of us at Malecare, Inc. Fighting Cancer, together. http://www.malecare.com
How to advocate for yourself
Posted by: | CommentsSelf-advocacy can be a positive experience and often gives a person a sense of control in a time of uncertainty. Advocacy doesn’t have to be time-consuming or difficult—it can be as simple as asking more questions at a doctor’s appointment. Furthermore, being a self-advocate doesn’t mean that you are responsible for your cancer care alone. Many people involve friends and family members to help find and sort all of the information necessary to make decisions regarding care and treatment.
ASCO has developed a webpage that may be helpful to men who are making decisions about prostate cancer. You can click here to view the page.
How would you modify the information on this page for men who are dealing with prostate cancer?
Tool to evaluate distress in prostate cancer
Posted by: | CommentsDistress,anxiety and depression can be a normal part of the cancer experience. How do you know if the problem is serious and needs treatment? NCCN and ACS have developed a tool that will help patients identify when they need to get support from outside sources.
* Introduction
* What Is Distress?
* How Do You Know When Distress Is Normal — or More Serious?
* Tools to Help Measure Your Distress
* How Can I Help Myself Cope with Cancer?
* Complementary Therapies
* Cancer Organizations as Resources
* Internet Resources
* Glossary
Work-Up (Evaluation) and Treatment Guidelines: Decision Trees
* Screening for Distress
* Treatment for Mild Distress
* Treatment for Moderate or Severe Distress
For additional information click here.
Biobanks
Posted by: | CommentsHow do scientists discover new genetic “biomarkers” to diagnose and treat disease early? The research community cites access to high quality biospecimens as the single most critical need for conducting today’s generation of molecular or genomic experiments. Yet the field of biospecimens has lagged behind virtually every other area of medical research.
Biobanks are storage facilities for biospecimens. men with prostate cancer should talk to their doctors about opportunities for their biospecimens to be used in prostate cancer research.
To listen to a podcast about biobanks click here.
To learn more go to the biobankcentral.org website by clicking here.
Talking to your doctor
Posted by: | CommentsFaced with a cancer diagnosis, effective communication between doctors and patients is crucial. Yet, often, a doctor’s style or time constraints don’t meet the patient’s needs. Other times, patients are too overwhelmed with the confusion of a diagnosis to absorb all the information they need. In the current podcast, CR correspondent Kevin Begos talks to patients and a doctor about the importance of good communication—and how to develop a relationship that works for both doctor and patient.
To listen to the podcast click here.
Communication-How can you improve your doctor-patient relationship?
Posted by: | CommentsFaced with a cancer diagnosis, effective communication between doctors and patients is crucial. Yet, often, a doctor’s style or time constraints don’t meet the patient’s needs. Other times, patients are too overwhelmed with the confusion of a diagnosis to absorb all the information they need. In the current podcast, CR correspondent Kevin Begos talks to patients and a doctor about the importance of good communication—and how to develop a relationship that works for both doctor and patient.
This podcast for both clinicians and patients may give each some understanding of the problems that the other experiences.
To listen to the podcast click here.