Advocacy smorgasbord-Advocate 4 breast cancer, healthcare causes
Comments
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Tell Congress to Expand Paid Leave for People With Chronic Heath Conditions
"Do I lose my salaried job that I love, which gives me the health benefits I need as a cancer survivor, or do I keep my job and risk contracting COVID-19, which could kill me?" asks Veronika, a cancer survivor.
Use the links below to call or email your Members of Congress, or contact Lindsay Houff and we are happy to help you.
- Find your Senators' emails and phone numbers »
- Find your Representative's emails and phone numbers »
- Find who your Members of Congress are using your zip code »
Phone Script for Calling Congressional Offices
Below is a brief script to use when calling Congressional offices to support paid leave.
My name is _________ and I am a constituent of yours from _________. I am calling to ask that you expand eligibility for the paid family and medical leave to include people with chronic conditions, like cancer, and working members of their households. This will help ensure that the health and well-being of cancer survivors like me (or my loved one), who are considered high risk for COVID-19, are protected and can remain home if their job would put their health at risk.
For more tips on how to tell your story and relate them to talking points about expanding paid leave, download this helpful worksheet.
This action is sponsored by the National Coalition for Cancer Survivorship.
You can go here for more resources and instructions: https://www.canceradvocacy.org/nccs-news/advocacy-alert-tell-congress-to-expand-paid-leave-eligibility-to-cancer-survivors/?mc_cid=a69a16e1ef&mc_eid=12d673e585
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Lumpie, have you considered that the effect of you “adopting” threads to wallpaper them with your research links has the effect of quashing active discussion on the thread? It does. Nothing to keep you from starting your own threads. Justmy observation.
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MelissaDallas: Humm... Thanks for sharing your thoughts. My intent has not been to discourage discussion but rather to provide a a way for those who seek efficient access to organized advocacy efforts to access those and make their voices heard. Certainly, not all efforts will appeal to all readers. Many of us probably feel like our plates are full and it can be hard to research issues and build efficient communications efforts from scratch. I would encourage those who wish to discuss issues or approaches to advocacy to do so.
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The US Congress is currently considering options for COVID relief before certain provisions expire in late July and the elections gear up for the fall season. Therefore, if you get email, you will probably receive solicitations to voice your concerns. And it offers opportunities to speak up via templated citizen participation efforts.
There is a Komen campaign at present. They are asking Congress to:
- Implement Chemotherapy Parity
- Declare Clinical Trials for Treatments for Life-Threatening Conditions as Essential
- Open Healthcare.gov Enrollment and Increase Medicaid Funding
- Address Surprise Medical Billing
- Expand Paid Leave
If you wish to learn more or participate, you can go here: https://p2a.co/UdiZI71
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Stage IV Stampede!
Reminder to anyone interested who has not yet registered.... there is still time! The Stampeded is going virtual! **August** is Stampede month. The Stage IV Stampede is part of a grassroots advocacy effort designed to advocate for MBC priorities with members of Congress. Join us, bring friends and family - anyone who might advocate with us. Help educate members of Congress about priorities for the MBC community. No experience necessary! {cross posting}
https://www.metavivor.org/take-action/stage-iv-sta...
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(For U.S. residents) One minute activist....
Not cancer specific, but..... the Peggy Lillis Foundation is asking supporters of transparency in healthcare and patient safety to sign on to our public letter urging the Centers for Medicare and Medicaid Services (CMS) reinstate collecting and reporting requirements for the Quality Payment Program.
On March 22, 2020, CMS announced that it would grant exemptions and extensions of reporting requirements for clinicians, providers and facilities participating in Medicare quality reporting programs. It is granting exceptions from reporting health care facility acquired infections. Data shows that these reporting requirements reduce the rates of infection at health care facilities. In one study, bacterial co-infections were shown to be a factor in 50% of COVID-19 deaths. This may be a matter of concern to some of us who are particularly vulnerable to infection owing to compromised immune systems. If you wish to sign, please do so by Monday, August 10, 2020.
Find the petition here:
https://peggyfoundation.salsalabs.org/cmsreinstatehaireporting/index.html
Article by Jayne O'Donnell of USA TODAY on infection reporting during COVID pandemic.
A commentary published in the American Journal of Infection Control:
https://www.ajicjournal.org/article/S0196-6553(20)30634-9/pdf
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(U.S. voters...)
Concerned about voting in this year's elections during the coronavirus pandemic? Confused by the rules around mail-in ballots or early voting?
You can vote safely, and be certain that your vote counts, by checking out Consumer Reports' Guide to Voting During the Pandemic. It has everything you need to know whether you choose to vote by mail, vote early in person, or show up at the polls on Election Day.
Focus on this year's elections is heightened not only by safety concerns due to COVID-19, but also the unusually high level of voter participation expected. It's expected that at least half of the votes cast in the Nov. 3 general election will be by mail-in ballot.
Rules for mail-in voting vary by state, but there is no state where you can't vote by mail. To find out about registration and voting in your state, go to the Can I Vote? page of the National Association of Secretaries of State website. (This is the best single source of links to state-by-state voter registration tools and information, so keep it handy.)
Early voting, now available in about 40 states, is another increasingly popular option. It's an effective way to avoid crowds and long lines at polling stations on Election Day -- decreasing the risk of COVID exposure. You can check your state's early voting rules here or through the Can I Vote? page.
And if you choose to vote in-person at the polls, the CDC has issued special COVID-19 safety recommendations for voters.
Help us spread the word about voting safely during the pandemic by forwarding this email to friends and family. Remember to vote, and vote safely!
(This info courtesy of Consumer Reports.)
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Lumpie - thank you for posting the voting information
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The National Breast Cancer Coalition has a new Advocacy Action Center. It allows advocates to send template letters directly to U.S. federal legislators.
Their current action is in favor of the Metastatic Breast Cancer Access to Care Act (S. 1374/H.R. 2178). The Metastatic Breast Cancer Access to Care Act would amend the Social Security Act to eliminate waiting periods for social security disability insurance benefits (SSDI) and Medicare coverage for eligible individuals with metastatic breast cancer. Access the action here:
https://www.stopbreastcancer.org/what-we-do/policy/find-tools-to-take-action/#/
Read more about their Legislative and Public Policy Priorities here:
https://www.stopbreastcancer.org/information-center/positions-policies/
Speaking up makes a difference. Professional lobbyists tell us that hearing from as few as 5 constituents can make the difference on how a legislator votes on an issue. Rally your friends and family! Small actions can make a big difference.
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Hi
I just stumbled on an article written by 'Music Lover' about the Lavender Procedure. It was posted on Nov 1, 2015. I'm the guy referred to in the article and would like to contact Music Lover. Can anyone help me???
Thanks
Dr. Bretz
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tamdoc49: I don't know of a 'Music Lover' but will take a look and see if I can figure anything out. Do you have a citation for the post? Where was it? On BC.org? Thx/good luck.
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I Was Right — How one doctor learned the importance of advocacy
episode called Infectious and {section on patient advocacy} starts at 12:10 on the podcast. It's from Brita Lundberg, MD, patient advocate and founder of Lundberg Health Associates in Boston.
https://www.medpagetoday.com/podcasts/anamnesis/87...
{Really interesting commentary - by a physician - on the importance of patient advocacy (she was advocating for her mom). Not BC specific. No charge to access but you may need to subscribe/sign in. Cross-posted.}
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ASCO Advocacy
On September 16, the Association for Clinical Oncology (ASCO) will be hosting its first ever completely virtual Advocacy Summit.
...to advocate for policies that will improve access to high-quality, equitable care for people with cancer and ensure robust funding for cancer research.
Those who are not attending the virtual Advocacy Summit events are encouraged to participate in this year's online Week of Action from September 14-18. With ASCO's easy-to-use ACT Network supporters can efficiently contact their lawmakers to urge them to take action.
This year's advocates plan to discuss with Congressional leaders:
- The importance of Congressional support of the CLINICAL TREATMENT Act in the House and companion legislation in the Senate—aimed at expanding Medicaid beneficiary participation in clinical trials.
- The need for co-sponsorship for the Safe Step Act, which will help protect patients from harmful step therapy protocols.
- The impact COVID-19 has had on their practices and research, and for support on needed changes for telehealth and research funding.
Virtual advocates can also get involved on Twitter by following @ASCO and using the hashtag #ASCOAdvocacySummit. Reach out to representatives, interact with fellow advocates, or show your "advocacy from home" setup.
You can access ASCO advocacy information here. The site includes template letters. Just change "oncologist" to "patient advocate" and you should be good to go.
https://asco.quorum.us/action_center/
You may have to sign in but it says you can set up a guest account which should be free.
Stay up-to-date with oncology-related advocacy and policy news by bookmarking or circling back to ASCO in Action.
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Ensure the Health and Safety of Cancer Survivors {U.S. residents}
Veronika Panagiotou is one of the nearly 17 million cancer survivors who face a life or death decision about physically returning to work. Veronika, a Non-Hodgkin Lymphoma cancer survivor, NCCS advocate, and Museum Educator, lead group tours of young, aspiring artists at the Children's Museum of Pittsburgh.
As a cancer survivor with a depleted immune system, she is at a heightened risk for a deadly infection if she contracts COVID-19, which would most likely cost her her life. But now, she fears her job will soon require her to go back to the museum, which in turn, will compromise her health and safety.
Take action to protect cancer survivors, such as Veronika, who are faced with these fatal scenarios. Contact your Members of Congress by following the phone script and finding their contact information here.
P.S. - NCCS Shelley Fuld Nasso spoke with Veronika in this recent Cancer Convos podcast episode.
Related....
Advocacy Alert: Tell Congress to Expand Paid Leave Eligibility to Cancer Survivors
July 10, 2020 | In Cancer News, Cancer Policy Blog, NCCS News | Add Comment
Expand Eligibility for Paid Leave to Include Cancer Survivors:
We urge Congress to expand eligibility for the paid family and medical leave to include people with chronic conditions, like cancer, and working members of their households.
Because of their history of cancer and cancer treatment, cancer patients are especially vulnerable to COVID-19. Cancer survivors may be at higher risk of health complications from COVID-19 and may experience more serious infection if they acquire it.
Expanding eligibility for the paid family and medical leave program to include individuals the Centers for Disease Control (CDC) considers at high risk, will help ensure the health and safety of cancer patients and survivors.
NCCS was pleased to see the expansion of paid family and medical leave included in H.R. 6800, the HEROES Act. We urge the Senate to also protect cancer survivors, who may require time away from work due to the risk COVID-19 poses to their health or health of a loved one.
We urge Congress ensure people with underlying health conditions and working members of their household receive job protection and financial support that enables them to remain at home during the pandemic.
https://www.canceradvocacy.org/nccs-news/advocacy-...
{These courtesy of National Coalition for Cancer Survivorship.}
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Cancer Convos: Survivorship. Advocacy. Policy.
A Podcast from NCCS
If you like podcasts or want to listen while in the car or doing other tasks, National Coalition for Cancer Survivorship has a series of podcasts on cancer-related issues. You can listen or sign up here:It is also available on most services including Apple Podcasts, Spotify, SoundCloud and YouTube. Links provided at address above.0 -
Just got this in my inbox because I have Google alerts set for the " metastatic breast cancer access to care act."
Glad to see that Komen did some lobbying for this, and for the Cancer Drug Parity Act, which would require insurance to cover oral chemo at the same level that IV chemo is currently covered. I did not even know a bill like this existed. Super happy to see it, especially in light of the recent approval of oral Taxol in the US.
From Komen's Facebook page:
Today, more than 150 advocates held virtual meetings with lawmakers and key staff members across the country, urging them to:
1. Support the Cancer Drug Parity Act
2. Co-Sponsor the Metastatic Breast Cancer Access to Care Act
3. Protect access to breast cancer screening and diagnostic services by maintaining funding the National Breast & Cervical Cancer Early Detection Program
4. Ensure coverage for diagnostic exams through the Access to Breast Cancer Diagnosis ActLink to video with further information:
https://blog.komen.org/blog/susan-g-komen-advocates-take-important-messages-to-capitol-hill/
Will cross post to the Stage IV topics.0 -
FYI re two upcoming conferences:
This October month-long Komen conference is accessible through an app: https://whova.com/portal/ambcc_202101/
This one is designed to be accessed via smartphone, but there is a link for accessing it on a computer.)
Living Beyond Breast Cancer is doing a conference for all stages October 24 and 25. Registration is $25, although there is a financial hardship allowance:
https://lbbcconf.vfairs.com/en/
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It's Pink-tober. Can't change that. Wanna take action but make it easy on yourself? Use NBCC's Action Center:
NBCC Tells Congress "Breast Cancer Needs Action, Not Awareness"
Today, NBCC sent a statement to every congressional office urging them to commit to putting substance before symbol. The statement asserts that this month must be more than just telling constituents that they are committed to ending breast cancer, but rather about passing legislation that would move us forward to achieve that goal.
Thanks to your advocacy we continue to add cosponsors to the Metastatic Breast Cancer Access to Care Act, but there is still more to do. Currently there are 176 Representatives cosponsoring H.R. 2178 and 22 Senators cosponsoring S. 1374. Help NBCC share our message with Congress by reaching out to your Members and asking them to cosponsor the Metastatic Breast Cancer Access to Care Act today! Go to our new Action Center to reach out to your Members via email and social media. Tell them to provide needed health care access to those with metastatic breast cancer and commit to action this October.
The Action Center will help you send emails, Tweets, Facebook posts or make calls - whichever you pick.
https://www.stopbreastcancer.org/what-we-do/policy...
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Lesley Glenn, Co-Founder of the Annual Make Good Moves
The Health Design PodcastNCCS Elevate Ambassador, Lesley Glenn, has always been an advocate – even before her metastatic breast cancer diagnosis in 2012. She brought therapeutic art to marginalized, international, and incarcerated communities and ran her own non-profit organization. She has transferred that advocacy to her personal life experience with cancer and desires to extend her advocacy roles to include the underserved and rural communities.
She discusses her survivorship experience on The Health Design podcast, as well as her new project, Project Life: A Metastatic Breast Cancer Survivorship Initiative. Lesley plans for this initiative to address the discontinuity in survivorship programming that leaves out the metastatic patient. We are very fortunate for advocates like Lesley.
Related: NCCS spoke with metastatic advocates in this episode of the Cancer Convos podcast.https://canceradvocacy.org/get-involved/elevating-...
https://soundcloud.com/user-499494424/lesley-glenn...
{Courtesy of National Coalition for Cancer Survivorship. Yay, Lesley!}
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Virginia residents:
ACS CAN is hosting a Virtual Virginia Breast Health Equity Summit on Thursday, October 29th from 12:30 PM- 2:00 PM.Here's a quick rundown.
Focusing on health equity is not new to the American Cancer Society, in fact it is embedded in almost everything we do.
The COVID-19 pandemic has exacerbated disparities among our most vulnerable populations. Cancer is a disease that affects everyone, but it doesn't affect everyone equally. Health disparities adversely affect groups of people who have systematically experienced greater social or economic obstacles to health, based on their racial or ethnic group, religion, socioeconomic status, gender, age, or mental health; cognitive, sensory, or physical disability; sexual orientation or gender identity; geographic location; or other characteristics historically linked to discrimination or exclusion. For example, despite lower incidence rates among black women, they have death rates for breast cancer that are 41% higher than white women.
Addressing the inequities in cancer outcomes requires all of us to use a health equity lens in our work. Our families, friends, colleagues, and communities are counting on us. We are hosting this virtual Breast Health Equity Summit to educate our communities and influence policy decisions for meaningful, sustainable change.
Registration is free if you know anyone interested in joining. Registration can be completed by visiting www.cancer.org/vabreasthealthequitysummit
{The first screen implies that there is a fee to register, but if you click through, there is not. Registration is free.}
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If anyone is on twitter this is coming up tonight
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Quick and easy letters to U.S. state legislators:
Take Action! Improving Access to Essential Breast Screening for Women with Dense Breasts.
We encourage you to take action by visiting us at http://www.densebreasttests.com and write to your state legislators to ensure all women with dense breasts receive lifesaving testing.0 -
Oct 21, 2020 (for US residents)
The final presidential debate is tomorrow night. And I want to hear President Trump and Vice President Biden tell us what they're going to do to help fight cancer.
I realize that you might already know some of those answers. But there will be millions of Americans watching who don't.
Send a message to the Trump and Biden campaigns asking them to talk about their cancer plans at tomorrow night's debate. It takes less than a minute using our easy action form.
If you saw the previous debate, you know that it doesn't really matter what question the moderator asks. The candidates will talk about the issues most important to them. So, let's ask them to talk about fighting cancer.
ACS CAN volunteers have been talking with candidates in the most competitive U.S. Senate and U.S. House around the country getting them on-the-record about their position on our cancer issues. Now it's time to hear it from the top of the ticket.
Thank you for taking action,{from American Cancer Society Cancer Action Network}
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One minute activist action by Breast Cancer Action
Tell the Department of Justice: We Can't Be Pink'd
...we're calling out the Department of Justice (DOJ) and Attorney General William Barr for their attempts gut healthcare access and abolish protections for people living with pre-existing conditions, including breast cancer.
Share your story or a story of a loved one. Tell us why access to care is important to you!
https://p2a.co/h0cxRUZ?p2asource=
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Sharing this update courtesy of NCCS:
{Pertains to U.S. coverage, mostly Medicare}
Administration Drug Pricing Efforts
Over the past four years, the Trump Administration has focused attention on high drug prices by issuing proposals and signing executive orders, with few concrete policies enacted that would bring drug prices down for consumers. As he prepares to leave the White House, the President on Friday released two final rules regarding drug pricing, as a final effort to take action on this issue.
According to Rachel Sachs in a Health Affairs blog post, "The Administration has finalized the rules in a way that will create substantial legal jeopardy for them, and it is very likely that one or both will be invalidated on procedural grounds."
Here's what you need to know:- The Trump Administration issued final versions of two drug pricing rules it had proposed in the last two years: the "most-favored-nation rule," and the "rebate rule."
- The most-favored-nation (MFN) model plans to reimburse drug manufacturers at the lowest adjusted price paid by a set of similar, large nations. The program would begin with 50 drugs in the Medicare Part B program, including many drugs cancer patients rely on. The rule projects savings associated with decreased utilization, and it acknowledges that, "a portion of the savings is attributable to beneficiaries not accessing their drugs through the Medicare benefit."
- The rebate rule would eliminate the rebates pharmaceutical companies pay to pharmacy benefit managers. Rebates result in artificially high list prices, and in theory, the savings would be passed on to Medicare beneficiaries who use high-cost drugs. Other beneficiaries using lower cost drugs may not see savings. However, government actuaries estimated that a previous version of the rebate rule would result in Medicare Part D premium increases up to 25%.
NCCS opposes the MFN model, which would drastically change the way Medicare pays for certain drugs, including many oncology drugs, and could limit access to life-saving therapies for cancer patients. The rule acknowledges that the savings is achieved by reducing utilization. The rule states, "… a portion of the savings is attributable to beneficiaries not accessing their drugs through the Medicare benefit, along with the associated lost utilization."
NCCS has long advocated for reforms to the "buy and bill" system of reimbursing for Medicare Part B drugs. However, achieving savings by preventing patient access to the drugs they need will harm cancer survivors and is not an acceptable strategy to address the issue of high drug costs.{NCCS is the National Coalition for Cancer Survivorship.}
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RE the Lymphedema Treatment Act (U.S. readers):
We are at a make or break moment for getting the LTA passed this year!
The new form to quickly and easily: Contact Your Members of Congress.
We need you to contact legislators as soon as possible! It takes just a few minutes and when you submit – an email is automatically sent to the key contact for your Senators and Rep. Even if your members of Congress are already cosponsoring - especially if they are - because the ask now is for them to go to leadership and urge them to include the LTA in the year-end legislative package that is being negotiated right now!
A pre-written letter is provided and it only takes a couple minutes to add your name and address and why this is important to you. Offices must hear from constituents, not just our group, if we are going to succeed!
{Ask your friends and family to send these message, too!}
Lymphedema Advocacy Group
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NBCC Announcement regarding The CDC Breast and Cervical Cancer Prevention and Treatment Act (in the U.S.).
{This legislation....} happened because of all of you and NBCC's commitment to making a real difference, no matter the barriers in our way. ... we asked Senator Grassley, through our Iowa advocate network, to request a GAO report updating the data for the program. That report was published yesterday. We issued a short statement and will do a more in depth analysis of the report. Please see our statement:
GAO Issues Report on CDC Treatment Act
NBCC again thanks Senator Grassley for requesting the GAO report issued on November 30, on the implementation of the CDC Treatment Act (CDCTA), legislation championed by NBCC twenty years ago. While the number of people who were screened overall decreased, the share of people screened who were racial and ethnic minorities increased from 53% in 2011 to 73% in 2018. The report also underscores the importance of the ACA and Medicaid expansion which have been key to providing screening and treatment for low-income individuals, in conjunction with the CDCTA. It is important to note that in most states where there was no expansion of medicaid, treatment under the CDCTA increased. NBCC remains committed to its advocacy for access to high-quality health care for all and will protect the CDCTA and ACA, which provide vital health care for individuals who would otherwise fall through the cracks. We will share a more detailed analysis of the GAO report soon.
Announcement and link courtesy of NBCC
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The National Health Law Program protects and advances the health rights of low-income and underserved individuals and families. NHLP's recently launched My Care Counts campaign is aimed at engaging the general public in administrative advocacy to help protect and expand access to care.
Go here to learn more:
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Tell HHS No Cuts to Medicaid Services - Submit Your Comments Today
Thank you for your interest in My Care Counts and fighting for health equity! We need your help...
This spring, Congress took critical actions to protect health care for everyday people during the COVID-19 pandemic. Congress's deal was simple: if states wanted extra Medicaid money to cover health care costs, they could not cut health care coverage, services, or increase costs.
Go here to submit Comments:
https://whymycarecounts.org/share-your-comment/
Now, the administration is ignoring Congress and reversing existing policies to change the deal. The Department of Health and Human Services (HHS) has issued a Interim Final Rule (IFR) that allows states to keep all the extra money but strips away protections for people. For example, states could:
- Cut coverage for eligible people after hospitals or other health care providers have helped them sign up for Medicaid;
- Cut coverage for pregnant immigrant women who are lawfully present after they have their baby;
- Cut full Medicaid coverage for older adults turning 65 years old. These older adults will face increased costs and the potential for health crises as they transition to Medicare;
- Cut all kinds of health care services, like dental and vision, resulting in individuals going without needed care or taking on unexpected medical costs;
- Slash benefits and increase costs for individuals with disabilities, which may cause health crises or force them to be institutionalized.
- The Interim Final Rule also:
- paves the way for mass Medicaid terminations as soon as the public health emergency ends;
- allows states to slash services and coverage, including COVID-19 vaccines for women enrolled in Medicaid's breast and cervical cancer programs.
These health care cuts will unfairly target women, people of color, immigrants, and people with disabilities – worsening existing health disparities. Comment today and tell the government no cuts to Medicaid services!
** What is a "Public Comment"? Video Primer
When the government changes how a health care law is carried out, it needs to let the public weigh-in—it's called a "public comment" process. Checkout our video primer aimed at teaching people about the public comment process!
This info from: National Health Law Project
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Not sure where to post this since it applies to all Rx drugs. Medicare Part D. I used one free read to read the whole article. A perspective. I do not agree with one statement at the end, making generic available over brand name. I think it should be choice. Reading through the many posts and thoughts on Rxs, the preference for generic vs which generic vs brand really varies. It should be choice. I have private and will keep it when I qualify for Medicare in a couple of years, unless there is a huge reform in Medicare and healthcare, which I do not expect. https://www.nejm.org/doi/full/10.1056/NEJMp2027580?query=WB
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