Help One Love One (HOLO) – July 2017 Newsletter

Help One Love One (HOLO) – July 2017 Newsletter

Dear Partners,

July is the month when we American’s celebrate independence and freedom.  Those are things most of us simply expect will be there because for most of us they have always been there.  But independence and freedom are more fleeting than we often realize.

Loss of health can spiral into loss of income which can reduce or completely annihilate our ability to live independently, thus losing our freedom to live as we would choose.  That is the situation for a few of our adults who have Cystic Fibrosis.  For many, goals were being accomplished.  Corporate ladders were being climbed or entrepreneurial ventures were in full swing.  Life was good, or at least good enough.  Then came the repeated lung infections, a diagnosis of Cystic Fibrosis Related Diabetes (CFRD), the need for an organ transplant, lung function started drastically dropping and the paychecks started reflecting all those missed days at work.  —- “What, sick again, now what am I going to do?” And just like that independence and freedom start slipping away.

Sometimes the only link between freedom and independence for the people on our nutrition program is the $100 gift card we mail them each month so they can shop for groceries at their supermarket.  It actually becomes that desperate for most of the people on our program.  Often time is all that is needed to return to more productive days; medications and therapies do their job.  But for some, health has simply vanished with little promise of returning.

At Help One Love One (HOLO) we attempt to understand the challenges of the CF journey.  When you partner with us you not only provide food but you also provide a path to independence, freedom, and dignity for our program recipients.  When all the chips are down at least there is still food in their pantry.

We’re so thankful for your help, Partners.  We can’t do this important work without you.  So please, once again, I’ll ask you to stop what you are doing and ask you to write your check or donate through our donation portal at http://helponeloveone.org/how-to-help/donate/ You are our CFer’s hero’s. We salute you for your compassion and willingness to share so they can enjoy another month of independence as adults who are fighting daily for their lives through the journey of Cystic Fibrosis.

Kelly McLain, Executive Director

 

EVERY GIFT HELPS US PROVIDE LIFESAVING NUTRITION

A gift of $25 provides groceries for 1 week for 1 CF adult.

A gift of $75 provides groceries for 1 week for 3 CF adults.

A gift of $150 provides groceries for 1 week for 6 CF adults.

A gift of $1200 provides groceries for 1 year for 1 CF adult.

 

 

SENATE HEALTH CARE BILL FAILS TO ADEQUATELY PROTECT PEOPLE WITH CF

 

“The Better Care Reconciliation Act (BCRA) that is being considered by the U.S. Senate is unacceptable for people with cystic fibrosis. If passed, this legislation would jeopardize the CF community’s ability to access life-saving treatments and care. The proposal for Medicaid is particularly concerning, as it goes even further than the American Health Care Act (ACA, Obama Care) in jeopardizing access to treatments and care by drastically cutting funding for this critical program. We implore senators to think about the people at the heart of this legislation and oppose this bill. We ask you, our HOLO Partners to phone your U.S. Senator’s and ask them to oppose this harmful bill.

To find the phone number for your U.S. Senator call the capitol switchboard at 202-224-3121 or look up your senator’s direct phone number at https://www.senate.gov/senators/contact/

As written, the BCRA would:      

  • Drastically cut funding to Medicaid, a critical source of coverage for one half of children and one third of adults living with CF.
  • End Medicaid expansion, causing millions of people to lose vital health coverage.
  • Remove protections against annual and lifetime caps, including for the millions of Americans with employer-sponsored insurance.
  • Allow states to waive the guarantee of essential health benefits, which would segment the market into plans for sick people and plans for healthy people, driving up the cost of plans for people with serious health care needs.
  • Give some people less financial assistance to purchase coverage, potentially putting adequate health care coverage financially out of reach for them.
  • Open the door for states to bring back high-risk pools, which put people with serious health conditions into a separate insurance markets and have been shown to result in higher premiums, longer waiting periods, and stricter enrollment caps.  
  • Allow health plans to cover a lower share of patients’ medical expenses, which means higher out-of-pocket costs for individuals.
  • Provide insufficient financial resources to incentivize insurance companies to participate in the individual marketplace and to keep premiums down.
  • Establish a six-month lockout period for people who let their insurance lapse for more than 63 days, which could prevent people from accessing vital medications or care for months at a time.

From the very beginning of this process, the Cystic Fibrosis Foundation has been clear that any legislation must protect the needs of individuals with cystic fibrosis and their ability to get adequate, affordable health insurance. The BCRA fails to ensure that people with the disease — regardless of income, employment, health status, or geographic location — can get the specialized care they need to live longer, healthier lives.”   

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