|
About Us |
|
To contact us: |
|
PAACT Inc. (Patient Advocates for Advanced Cancer Treatments) PO Box 141695 Grand Rapids, MI 49514
1143 Parmelee Ave NW Grand Rapids, MI 49504 |
|
In 1984 a relatively unknown man, Lloyd Ney, was diagnosed with prostate cancer. That one diagnosis, routine for 263,060 men yearly, with estimated deaths being 27,350 each year, began a chain of events - the results of which had and are continuing to have a profound affect on the treatment of prostate cancer for millions of prostate cancer patients in the United States and the rest of the world.
In 1984 the standard treatments offered were radical prostatectomy and external beam radiation. Unfortunately, most patients diagnosed in that era were already metastatic and both therapies had very high failure rates. The early warning PSA test had not yet been invented. Typical of what happened to many prostate cancer patients, Lloyd Ney was informed by his physician that the radiation was not effective in curing him or slowing down the advance of the disease. In fact the treating physician indicated he was terminal and had a few months to live since they knew of no way to stop the spread of the disease.
Not accepting this morbid prognosis he researched the literature and spoke with doctors and other patients with the same problem. Through this effort he became aware of the work of Dr. Fernand Labrie in Canada and his pioneering combination hormonal blockade therapy. He became a patient of Dr. Labrie, accepted the total hormonal blockage protocol, and lived for another 14 years.
Disturbed by the limited treatment options for PC patients, and even more so by the lack of available literature that could educate the men about the disease and treatment options, Lloyd decided to do what he could for his fellow man.
At the first visit to Dr. Labrie’s clinic he witnessed a waiting room full of American men that came there for the same treatment. Incensed at the whole scenario of limited treatment options, men having to leave the country in search of better treatments and the lack of available literature for prostate cancer patients, Lloyd announced to the waiting room full of PC patients that he, that very day, was starting a prostate cancer advocacy organization that would publish a prostate cancer newsletter and make it available to all prostate cancer patients, advocates and doctors.
Thus PAACT, INC. (Patient Advocates for Advanced Cancer Treatments, Inc.) was born. With a passionate belief in patient empowerment through knowledge and dedicated to the belief that prostate cancer patients have the right to know all the options for Detection, Diagnosis, Evaluation and Treatments for prostate cancer, Lloyd, as promised, set up the presses and began publishing the Prostate Cancer Communication newsletter. At that time educational material available for PC patients was non-existent. The Prostate Cancer Communication, a 24 page quarterly newsletter became the primary conduit for prostate cancer information to the patients, advocates and physicians. It still serves that purpose today with timely articles on the latest developments in the treatments for prostate cancer and other health issues related to the disease.
Working with concerned doctors, many of whom were leading specialists in PC treatment and who shared Lloyd’s beliefs - basic concepts were established for PAACT that served as a road map for furthering the empowerment movement for the prostate cancer patients. The concepts included choices, communication, compassion and cooperation, centers of excellence, charity and concentration of effort. Following this foundation of purpose, PAACT proceeded to undertake the activities necessary to achieve the goals implied by the tenets.
These tenets were documented in the preface of PAACT’s Prostate Cancer Report (PCR), a 66 page treatise on the prostate, prostate cancer and treatment options available to the patients. Published in 1992 the PCR, a textbook for the PC patient, was delivered to all PAACT members and was included in PAACT’s initial patient package of PC information. Updated information to the PCR is printed in the Prostate Cancer Communication newsletters to keep the PAACT members up to date on new developments.
Working with scores of doctors and gathering information from sources throughout the world, PAACT not only became a clearinghouse for prostate cancer prevention and treatment information for men, but also championed causes related to improved knowledge of and treatments for PC.
PAACT became the largest prostate cancer teaching and support group in the world; the first organization to introduce patient networking in relation to prostate cancer. PAACT encouraged and supported the formation of over 150 PAACT PC support groups. The PAACT member database numbers over 36,000 prostate cancer patients and is growing daily.
PAACT’s pioneering effort in PC communication and advocacy paved the way for many subsequent prostate cancer newsletters, support groups, books, pamphlets, magazines and the information on the internet that are available to the public today.
In 1985 PAACT was successful in getting the Federal Drug Administration (FDA), New Drug Application (NDA) and Investigation of New Drug (IND) trials through Dr. Fernand Labrie of Laval University in Quebec, Canada. This permitted the use of combination hormonal therapy (CHT) on patients in the United States. Later, PAACT was able to have U.S. physicians authorized by Dr. Labrie’s application authority to use CHT in the United States years before the CHT drugs were FDA approved. PAACT was the prime motivation in encouraging pretreatment with CHT to reduce both tumor and prostate gland volume, which has considerably enhanced the results of secondary therapies.
PAACT helped establish over 140 cryosurgery sites in the U.S. to provide cryosurgical ablation of the prostate (CSAP) as an alternate to radical prostatectomy for qualified patients with organ-confined disease. For some years CSAP was under the cloud of a non-coverage medical insurance policy and many men opting for CSAP were denied payment by Medicare and insurance companies.
PAACT’s Legal Action Committee (LAC-PAACT) prepared legal documents (LAC-PAACT KIT) including bibliographies, copies of published studies showing the effectiveness and safety of CSAP and favorable court decisions that claimants denied payment for cryosurgery found helpful in obtaining reimbursement from Medicare and insurance companies. To date nearly every PAACT member originally denied payment has won favorable decisions using the LAC-PAACT KIT in presenting their case for reimbursement. In July 1999 the Health Care Financing Administration (HCFA) finally reversed the national non-coverage policy and approved medical coverage for CSAP as a primary treatment for clinically localized PC.
PAACT was instrumental in introducing legislation in some states mandating full disclosure by physicians of all available options for detection, diagnosis, evaluation and treatment of prostate cancer. Working with other concerned and interested advocacy groups, similar efforts were supported at the national level.
The PAACT organization is comprised of very capable staff members, who share a common desire to help patients become aware of our present understanding of prostate cancer, to help patients to participate in their own health improvement and to direct them to appropriate physicians and medical centers of excellence for treatment. First time PC or advocacy callers to PAACT requesting information receive the PAACT initial patient package of prostate cancer information. The educational material is designed to provide a quick course in the detection, diagnosis, evaluation and treatment options for prostate cancer. Included in the package is the quarterly Prostate Cancer Communication newsletter. The caller is then placed on the mailing list for future newsletters.
In addition to the newsletter a vital part of PAACT’s service is communication via telephone, fax and e-mail offering information, encouragement and support to prostate cancer patients, their families, friends and doctors.
The information is furnished without financial obligation. PAACT is a publicly supported 501 (c) (3) tax-exempt organization that depends solely on voluntary contributions from members and friends. The standard voluntary membership contribution is $50.00 which covers the cost of the initial patient package of PC information. For the patient package of PC information and the Prostate Cancer Communication newsletter contact the PAACT office at PO Box 141695, Grand Rapids, MI 49514, Phone 616-453-1477, Fax 616-453-1846, or E-mail paact@paactusa.org. You may also find PAACT on-line at www.paactusa.org.
The goals for PAACT established at its founding have not changed. Until a cure is discovered, patient empowerment through knowledge is the primary mission. In close cooperation with PAACT medical advisory board members, some of whom are on the cutting edge of new and improved treatment modalities, and researching the medical literature, PAACT will continue to identify new developments, and options in PC treatment for the prostate cancer patient. The bottom of the first page of the Cancer Communication newsletter has the following statement: “Let’s Conquer Prostate Cancer in Our Lifetime.” PAACT’s ultimate goal is to help make that statement a reality. |
|
“Let’s Conquer Prostate Cancer In OUR Lifetime” |
