Quantcast

Subscribe to:
POZ magazine
E-newsletters
Join POZ: Facebook MySpace Twitter Pinterest
Tumblr Google+ Flickr MySpace
POZ Personals
Sign In / Join
Username:
Password:
Welcome, Guest. Please login or register.
August 30, 2014, 04:51:18 AM

Login with username, password and session length


Members
  • Total Members: 23344
  • Latest: TML1991
Stats
  • Total Posts: 636626
  • Total Topics: 48319
  • Online Today: 171
  • Online Ever: 585
  • (January 07, 2014, 02:31:47 PM)
Users Online
Users: 2
Guests: 111
Total: 113

Welcome


Welcome to the POZ/AIDSmeds Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Am I Infected?” posting guidelines. Click here for posting guidelines pertaining to all other POZ/AIDSmeds community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: The Silver Project  (Read 3380 times)

0 Members and 1 Guest are viewing this topic.

Offline Oceanbeach

  • Member
  • Posts: 3,565
The Silver Project
« on: May 11, 2013, 03:40:43 PM »
I have been a patient at the Positive 360 Clinic at UCSF for several years.  This clinic is developed specifically for men and women who are living with HIV and are over the age of 50.  They are treating for the things which older people get as well as for HIV.  As a patient, I am doing very well there with undetectable vl and my CD 4 T-cells are remaining steady.  It had been the first time in 17 years with AIDS, I was able to not see my ID Doc for a full 6 months.

More recently, Dr. Malcolm John has sent an invitation for the patients to participate in The Silver Project, a program designed to better assess our health and tailor their services to better fit our personal needs.  Our Providers have already been doing some of the steps of the program but yesterday, I met with our Nurse for an in-depth health questionnaire/survey which covers physical, mental, social, and cognitive functions.  I was asked to count down from 100 by seven digits, which I refused...  As I stated to the Nurse, I fail;ed every math class I had all through school until I took Business Math in College where we learned how to use a calculator.

We did some Physical Function exercises, which I know as Sit and Stand from my Physical Therapy and also for fall risk assessment.

There was a vaccination update review where our Nurse noticed, I have only had a flu shot and started asking about others.  Pointed out the health records from 3 providers in 17 years, have everything, every done.  I asked the Nurse to locate my records, everything is there.  Found out I am immune to Hep A, Hep B, as I have been vaccinated and tested negative to Hep C.

There was a dental review and after my oral surgery next week, I will get a full upper denture and a partial lower denture.  My next appointment will include a full physical and the health review from the questionnaire.

Being on a mailing list of my friends in Sonoma County, I received a flyer and they are offering a similar program up there.  We are getting older and are at risk for heart disease and other complications.  Is there a Silver Project type of program where you all get treatment and care?   8)  Have the best day
Michael 

Offline Theyer

  • Member
  • Posts: 2,497
  • Current ambition. Walk the Dog .
Re: The Silver Project
« Reply #1 on: May 12, 2013, 05:17:15 PM »
Hello Michael,

Not that I have heard off in UK. Though quite a few health studies , I did one v. simular to what you described.

Regular source off a downer for me , seeing all the youngsters at the clinic , hate it.
m
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: The Silver Project
« Reply #2 on: May 12, 2013, 05:38:44 PM »
Hey Theyer,

They (UCSF) have a bigger HIV clinic somewhere but there are like 5 or 6 campuses throughout the city of San Francisco and I haven't seen it in all these years.  I did realize that this would be my last clinic when we chose it over all the others and I am expected to live a normal lifespan so...  I chose a doctor who is half my age, went to medical school, residency etc. there and hopefully will not retire until after I die.  I gave him 17 years of my medical records on hard copy.   8)  Have the best day
Michael   


Offline mitch777

  • Member
  • Posts: 3,462
  • wish i were here.
Re: The Silver Project
« Reply #3 on: May 12, 2013, 05:49:51 PM »
Wish we had a Silver Project here.
Great idea!
31 years hiv+ (oct. 2013) with a curtsy.

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: The Silver Project
« Reply #4 on: May 14, 2013, 12:26:08 AM »
Hey Mitch,

I've been a member of the Forums for around 8 or 9 years and since my life is so fascinating, I go for long periods of time without posting and I don't know where a lot of (most of) the Forum members live.  I was hoping the health care providers in the US are gearing up for some form of Silver Project because so many of us are living to be over 50 and need to be ready for old person treatment in addition to HIV care.   8)  Have the best day
Michael

Offline deibster

  • Member
  • Posts: 153
Re: The Silver Project
« Reply #5 on: May 14, 2013, 11:13:03 AM »
Hello all,
I live in Provincetown, MA. We have a very active ASO, the AIDS Support Group of Cape Cod; it's the center of my social life. Not only do we have Poz people over 50, we have poz people from 50 to 70; I'm 60. Being a resort and artsy community, some of us have moved here when we stopped working at our full-time careers.

 We have ID docs who have been treating this disease for 20 years or more, so they are keeping up with the times, and the aging population. They get continuing education from Beth Israel in Boston. One of these docs is about 65, so I don't know how much longer he'll keep working. Hopefully, he'll stay on, at least part-time, for several more years.
In brotherhood, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline Miss Philicia

  • Member
  • Posts: 24,013
  • celebrity poster, faker & poser
Re: The Silver Project
« Reply #6 on: May 14, 2013, 11:43:47 AM »
Just four years ago Philly's statistics for HIV showed 38% being over the age of 50, so I'm sure it's 40% or more by now. We're actually in the process of constructing the second publicly funded LGBT-friendly lower income senior housing facility in the US (the first one was Triangle Square/Hollywood CA) This $20 million project will have 56 units on six floors and is around the corner from both the William Way gay community center (which has many +50 oriented programs) as well as the largest HIV clinic in the city, and in the larger "Gayborhood" of the city's downtown. Rent will be between $165 and $785 per month depending on the income tier of the resident though I'm not sure what the age qualifier is.

dmhFund link

btw, the funding for this was passed by a legislature with Republican majorities in both houses and signed by a Republican governor. 8)

Here is an article from a couple weeks ago about the larger national effort to construct similar facilities, some public some private or a combination of funding.
« Last Edit: May 14, 2013, 11:49:42 AM by Miss Philicia »
"I’ve slept with enough men to know that I’m not gay"

Offline mitch777

  • Member
  • Posts: 3,462
  • wish i were here.
Re: The Silver Project
« Reply #7 on: May 14, 2013, 01:25:56 PM »
Hey Mitch,

I've been a member of the Forums for around 8 or 9 years and since my life is so fascinating, I go for long periods of time without posting and I don't know where a lot of (most of) the Forum members live.  I was hoping the health care providers in the US are gearing up for some form of Silver Project because so many of us are living to be over 50 and need to be ready for old person treatment in addition to HIV care.   8)  Have the best day
Michael
Hi Michael,

The concept is great and very needed but I think it will be very slow in developing.
The larger cities with larger hiv populations will be the first.
The possibility of such a project in Connecticut is doubtful IMO.
There are no gayborhoods in the state that I am aware of.



 We have ID docs who have been treating this disease for 20 years or more, so they are keeping up with the times, and the aging population. They get continuing education from Beth Israel in Boston. One of these docs is about 65, so I don't know how much longer he'll keep working. Hopefully, he'll stay on, at least part-time, for several more years.
In brotherhood, Deiby
Hey Deiby,
I had an ID doc for a few years (about 20 years ago) that moved his practice to the cape.
He was a nice guy and I was sorry to see him leave. (although I am very happy with my current doc)
Wonder if my old doc is still there. He is probably close to 65 years old now.



Here is an article from a couple weeks ago about the larger national effort to construct similar facilities, some public some private or a combination of funding.
Nice to see more LGBT housing is being built and considered for the older folks.
I've been checking periodically online for potential future retirement options.
Not much has gotten off the ground for awhile.
Seems odd as it appears the demand is much more than the supply.
31 years hiv+ (oct. 2013) with a curtsy.

Offline LetsKickASS

  • Member
  • Posts: 5
Re: The Silver Project
« Reply #8 on: May 25, 2013, 02:43:50 PM »
I live in San Francisco. I'm a long term survivor. I've been on several studies at SF General. I can't find any information online about the Silver Project. I'd like to inquire about joining and perhaps posting some of my experiences on my website www.LetsKickASS.org.

LetKickASS.org is dedicated to Healing Wounded AIDS Warriors—those traumatically affected by AIDS. HIV is now 30 years old. If our lives are extended, how do we move forward and plan for the next 30 years? Let's come together and figure it out.

AIDS Survivor Syndrome is a trauma-related disorder akin to PTSD. It affects long-term survivors of AIDS, and those who tested positive before 1996 when protease inhibitors changed HIV from a death sentence to a “chronic manageable illness”. Wounded AIDS Warriors are those traumatically affected by HIV/AIDS.

Please check out my effort on line or on Facebook: www.facebook.com/AIDSSurvivorSyndrome

Peace and Let's Kick (ASS)
Tez Anderson

Offline jm1953

  • Member
  • Posts: 262
Re: The Silver Project
« Reply #9 on: May 25, 2013, 08:51:17 PM »
Michael,

Thank you for posting this.  I think the Silver Project is a model many other cities should adopt.  I certainly wish we had one here in Seattle but funds are very tight.  This is an idea I may propose to the University of Washington Medical Department who run much of the HIV care here. 

Thanks again,

JM
Positive 25 years. 7/21/2012 Current CD 4: 780 Viral load: less than 50. 38 to 40%
Current drug regimen, Isentress, , Emtriva, Sustiva Wellbutrin, Klonipin, Allegra, Ambien, Testosterone, Nandrolone, Vicodin, Benedryl, Aspirin, lots of vitamin supplements.

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: The Silver Project
« Reply #10 on: June 26, 2013, 07:54:22 PM »
I live in San Francisco. I'm a long term survivor. I've been on several studies at SF General. I can't find any information online about the Silver Project. I'd like to inquire about joining and perhaps posting some of my experiences on my website www.LetsKickASS.org.

LetKickASS.org is dedicated to Healing Wounded AIDS Warriors—those traumatically affected by AIDS. HIV is now 30 years old. If our lives are extended, how do we move forward and plan for the next 30 years? Let's come together and figure it out.

AIDS Survivor Syndrome is a trauma-related disorder akin to PTSD. It affects long-term survivors of AIDS, and those who tested positive before 1996 when protease inhibitors changed HIV from a death sentence to a “chronic manageable illness”. Wounded AIDS Warriors are those traumatically affected by HIV/AIDS.

Please check out my effort on line or on Facebook: www.facebook.com/AIDSSurvivorSyndrome

Peace and Let's Kick (ASS)
Tez Anderson

Hey Tez,

The Positive 360 Clinic is at UCSF and specializes in care of the aging HIV population.  A patient must be a minimum of 50 years old and the Silver Project is a specialized treatment program to assist the providers in finding more needed services.  One must be a patient to be in the program.   8)  Have the best day
Michael

Offline harleymc

  • Member
  • Posts: 204
Re: The Silver Project
« Reply #11 on: July 13, 2013, 10:44:05 PM »
Given that the demographics for much of the western world is that the majority of PLWHAS are over 50 (ie we are the core demographic, not the youngsters), I'm wondering if hiving off us oldies into 'silver project' style clinics may be a retrograde step.

We certainly need clinicians/ clinics that can deal with ageing and HIV, but if us oldies are shunted out of the mainsteam HIV services we are essentially giving license to those clinics to ignore us while they chase the minority of patients who are under 50.

We need to demand accountability from HIV services so that they only receive government funding if they provide services that are appropriate and adequate for their core demographic, rather than creaming off funding while they only service the easy-to-care-for younger demographic.

Offline Oceanbeach

  • Member
  • Posts: 3,565
Re: The Silver Project
« Reply #12 on: July 14, 2013, 08:13:59 PM »
I do not see the Silver Project as a retrograde step.  The program at UCSF is the brain child of the Director of Medicine at Positive 360 clinic which specializes in care of the aging HIVer.  It is a tool to better define the needs of the patient.  As an example, men who are over the age of 50 are recommended to have a colonoscopy.  As an AIDS Patient, I was not referred for a colonoscopy until I was 58 and was expected by my ID Doc to live a long life and die at age 86 of a heart attack.

Even as late as 1996 when I was diagnosed, we weren't expected to live 5 more years.   8)  Have the best day
Michael

Offline harleymc

  • Member
  • Posts: 204
Re: The Silver Project
« Reply #13 on: July 27, 2013, 09:19:01 PM »
"As an AIDS Patient, I was not referred for a colonoscopy until I was 58"

Why are we still pumping money into AIDS clinics that are failing basic medicine?


Offline deibster

  • Member
  • Posts: 153
Re: The Silver Project
« Reply #14 on: July 27, 2013, 11:37:51 PM »
I don't know why you guys live in red states. I live in a small town in MA but we have a non-profit health clinic for Everyone, not just the poor & the hiv people. I know because I see many of the professional people in town, in the waiting room, going to see the same staff that I see. The clinic is part of the Beth-Israel Deaconess system in Boston & we get resident doctors as well as specialists from Boston working at our clinic on a regular basis. My ID doc is a visitor from Beth Israel.

Harley, if your clinic does not refer you for procedures, you have to do research on your own and Request a referral for the procedures recommended for a man your age. Are you on Medicare? If so, you do Not need an insurance referral, and you may be able to call the specialist yourself to request an appointment.

My husband, Not HIV poz, over 65 on Medicare, feels like hell. He was referred to a nephrologist & we went directly to the referral desk to find out how long it would take. They claimed that there were 300 referrals ahead of him & that it would take 2 weeks. He spoke to the doc the next business day & it had already been done; apparently because we went directly to the referral desk & asked about it. You have to stick up for yourself and ask for what you need.
Best of Luck. Hugs from Provincetown, Deiby
Poz since Dec 1992. Meds since 1995. Disability since 2005.

Prezista/Norvir, Epzicom, Cytomel, Prevacid, pravastatin, Fenofibrate, Remeron, Zoloft, Concerta, doxazosin, Allegra180, Nasocort, Centrum, Flax Oil, Fish Oil

Offline leatherman

  • Member
  • Posts: 6,148
  • Google and HIV meds are Your Friends
Re: The Silver Project
« Reply #15 on: July 28, 2013, 12:15:56 AM »
We need to demand accountability from HIV services so that they only receive government funding if they provide services that are appropriate and adequate
one good way to do this is to join the regional Ryan White Quality Management Committee.  the RW law requires states/regions to have an oversight QM committee and consumer input/membership is also required.

some resources
http://hab.hrsa.gov/deliverhivaidscare/clinicalguide11/cg-00-00.html

http://nationalqualitycenter.org/
recently I was sent by my ASO (Catawba Care) in SC and the Charlotte RW TGA in NC to the National Quality center's "Training of Consumers on Quality" and learned a lot about how the laws actually require that consumers be engaged in the oversight of HIV health care.

While it may be a pain in the ass to have to get involved and basically force clinics to be compliant and to give quality health care, it's a lot easier to sit at a conference table and demand better health care than to be near death holding signs outside a government agency demanding the fast tracking and production of medications.

I've mentioned it before in other threads discussing advocacy and this isn't anything different. Good health care doesn't just fall from the sky. In the beginning, PLWHA had to demand services, and today PLWH still need to be demanding services and funding. We can clearly see that when the demand is eased up, the services begin to fail, falter or disappear.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

  • Member
  • Posts: 6,148
  • Google and HIV meds are Your Friends
Re: The Silver Project
« Reply #16 on: July 28, 2013, 12:22:02 AM »
I don't know why you guys live in red states.
although I missed the part where anyone talked about being in a "red state", the obvious answer is because these are the states where our homes and families are. ;)

often HIV goes hand-in-hand with poverty; and poverty prevents people from just being able to pack up and leave "red states" or leave rural areas (in any colored states) where services often don't reach as well or transportation is an issue.
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

 


Terms of Membership for these forums
 

© 2014 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.